Extravagant Gifts

Extravagant Gifts...
The best parts of this Christmas Season, have been so unexpected.  Britton has been working on some mirrors he's making.  It takes a VERY long time for him to complete one.  We cut plywood into just the right size.  Sawing and preparing and making sure it will fit.  Then he carefully applies the liquid nails to the back of each mirror placing it onto the center of each board.  After that, we gently place beautiful tiles, and colored glass all around the outside edges.  He sits so focused and carefully decides which piece goes where.  His eyes squint and he tilts his head, thinking, deciding, creating.  He's quite the artist, this handsome autistic man God has given me.  Two months later, many hours, and many decisions later, you might have one mirror.  He is so careful, he is creating.  Since I've spent so much time beside him, encouraging and "helping" I have so many times been drawn to think of God creating us.  Carefully picking up each piece, matching what only He knows goes together.  Making a very individual masterpiece.  It always makes me smile.
In the beginning I tried to "help" way more than he would allow.  I would "suggest" a piece here or there.  He would sit it back down, and continue with His plan.  Often he would pat the top of my hand, assuring me he had a vision.  It kept me smiling for days.  It made me realize how often I had done that in prayer.  "This would help so much God, please work this into your plan for us."  I know He must carefully listen, all the while moving forward with what He knows was the best fit in the first place...sitting my suggestion aside as gently as possible.
If you received, or receive in the future a "not so perfect" mirror or picture frame from Britton, just know that he worked countless hours, planning, moving, changing, and making each piece exactly what he envisions to be a masterpiece.  When he handed the very first one off, I saw him tear up.  It took all I had to smile, and encourage him to give it away.  All I could think of was the word,
EXTRAVAGANT.  What an extravagant gift, to give of oneself.  Totally something that is so dear.  Of course that brings me to the most extravagant gift of all, Jesus.  How valuable.  How do you put a value on "the pearl of great price?"  The similarities surprised me.  The person who receives or buys a mirror from Britton, has no clue as to the intrinsic value, the care, the meticulous plan it took to bring....a simple mirror to completion.  Do we, really understand the meticulous, care, planning, and love that went into the birth of the savior of the world? Maybe a ridiculous analogy, but God has to teach me from simple things.

As I struggle with Britton's future and what God might have planned for this boy man?  The one thing that gives me any peace, is knowing that God has the right piece for my life, for his life, for all our lives.  I definitely feel like a bunch of pieces of broken glass and tile more days than not.  However some of Britton's creations, that didn't seem to "match" from the beginning became sparkling, pictures of a creator that surprised everyone who had shook their heads from the beginning.

Apart from Autism, I love Christmas.  After all, it's the "most wonderful time of the year."
I was worried that this month's blog would be so depressing having battled back seizures, and so much regression that hope has felt in short supply.
I know, I KNOW, I really do know I have so much to be grateful for...  AND, I am grateful for those things.  Those things, (my precious grand babies, my daughters, my amazing husband, and last but not least, the love and care of the King of the World.) I am truly grateful for those things, those people in my life.  Those are the things that truly keep me from going over the edge.  Where I find myself wavering at the precipice all to often.  Staring down at the impossibility of what the future, and the lack of help could mean for Britton and I.  I admit to crying A LOT in the past few months.  AND I even thrown myself several pity parties.  (No one else attends, but trust me, no one else could bear attending.)
As I attempt not to jump off the edge of other peoples judgements, and criticisms, I am overwhelmed and I just have to shut myself off from the rest of the world for periods of time.  This is what we all do during times of tragedy.  The problem is, if you live in a house with someone who is severely autistic, you're living a tragedy that will continue long after your gone.  What a heritage to leave your other children.
Unlike so many adults with autism that YOU never see, my son wants to go EVERYWHERE!  He wants to go out to eat, he wants to go to church, and grocery shopping.  Now you're thinking, lucky you.  Well maybe... unless, hey, you want to go with me?  Now you get to "enjoy" all the constant grabbing and hugging and demanding that I kiss his hands over and over and over and over.  There aren't enough lines to say how many times he demands it.  If he catches me by surprise he usually busts my lips.  That happens about once a week.  It looks very much like I am attempting to ward off an attack.  He jumps, and he laughs, and he hums and he flaps his arms.  (FYI he weighs 140lbs) People stare,  make comments and snide remarks.  You'd think after twenty plus years I'd be immune.  Or at least I'd have grown thicker skin.  The bad part is, if I hear  them I don't run off crying like I did for so many years.  Now, I turn around and explain autism to them.  They really appreciate it.
Recently I read this, let's call it an admonition...
"Much of what you must forgive others for, and especially yourself, is the ignorance that damages.  People don't only hurt willfully.  More often because they simply don't know anything else; they don't know how to be anything else, anything better."

You can only vaguely, sort of, maybe a tiny bit understand how difficult Holidays are in the lives of people with autism.  They need desperately for everything to stay the SAME.  They need their daily routine to always get up at a certain time...to eat at a certain time, go the same places, do the same things.  The SAME.....SAME SAME SAME!  Autism, the Holidays are not for you!  The rest of us, "the normals" prefer the change.  The chance to sleep in, read a book, watch some Holiday football, or Christmas movies.  The change that helps us get through the rest of the year.  But alas, it is never to be. He just cannot do it.  He ENDURES it.  He HATES it!  And, because he hates it all, so do we.  

Today I took Britton to six restaurants.  Yes, I said SIX.  He refused to use his Ipad to tell me where he WANTED to go.  (Not one of the restaurants can be guaranteed to be GFCF, but I decided to throw caution to the wind.)   Since he is nonverbal let me explain how this goes down.  I pull in, I say, "Do you want to eat here?"  I turn off the car.  If the answer is yes, he gets out.  If the answer is No, he reaches over and restarts the car.  This can feel endless.  Goodness, today it was endless!  I hate it extra during the holidays because EVERYONE is eating out.  No offense to the rest of "the normals" but I'd rather eat with as few of you as possible.  The reason?  I can't trust you to be kind, or understanding.  I can't trust you NOT TO STARE!   I always wonder if his brain injury showed on the outside, (e.g. a giant concave skull, or huge bulging brain out one ear?)  Would i get the same responses?  In some ways I am jealous of those disabilities that LOOK DISABLED.  At least people get it immediately.  They drop their gaze, and attempt to mind their own business.  Not so much with autism.
My son also, tries to constantly kiss my poor husband as well.  I admit that I "lost it" in the mall during a short shopping stent over the holiday.  A man looked at my son trying to kiss my husband, and muttered, "disgusting" as he went by.  I couldn't take it.  I was not exhibiting the gifts of the spirit that day, (I've since repented) and so I chased him down and explained, "WHY Autism isn't Disgusting101."    He was very apologetic, of course, but really?  How necessary was that?  I was only a little ashamed of myself.  My poor husband picked up speed and kept walking, he pretended not to know me.  Somedays he has to endure autism, and the collateral damage of autism as well.
This is the season of LOVE.  Of God's most extravagant gift He ever gave mankind.  Kindness, and gratefulness, and just all out good manners should be at their peak by the last week of December.  Should be.  But we all know that is far from the truth.  As the Season progressed, and I watched one mirror after the next be completed, I realized that God's extravagant gift should be reflected in each of us.
Now every time I look in the mirror, I will wonder, what do you see?

I SEE YOU!

"I SEE YOU!"
Autism just does not cooperate with the "REAL world."  But autism IS my real world. When our lives betray us, and it happens to everyone... Autism does not budge.  Actually, Autism will usually kick up a notch because my son can sense any extra anxiety in anyone around him, especially me.  Which in turn, makes him more anxious and it's like pouring gasoline on a fire.  Whoosh!  Then, nothing else matters because all his autistic challenges are magnified.  By autistic challenges I should be more specific.  Last blog I talked about the constant touching, tapping my head, squeezing my hands tap, squeeze, kiss.. over and over and over.  It's almost nonstop.  So if I'm on the phone.... I'm talking,  it's like this,"hello, yes (tap, tap, tap, squeeze, squeeze, tap, kiss, kiss, kiss) my name is Teresa Holman, (tap, tap, tap, squeeze, kiss, squeeze, tap and kiss and tap.)  Seriously, that's just how it is.  You almost have to see it to believe the reality.  (Perhaps a short video is in order?)  But there is also the constant hand shaking, humming, walking on tip toes, and one of his new favorites, slamming the toilet lid over and over and over.... You may be thinking, oh big deal, my teenager has about put me in the looney bin.  Well I understand.  I've already had three teenagers nearly put me there, and trust me, I'll take on a teenager, well now I will.  Experience is definitely a cruel teacher.

This past month, I had the unfortunate experience of having my car stolen.  Now, that's bad enough for sure... but add to that, autism that seriously needs things to stay the same.  So when we change cars, it's a big event.  My husband has been driving his truck for over seven years and 140,000+ miles, and I don't know that he will ever get anything else.  Britton loves that truck.  So, as my grand daughter said, "where is nana's car?  where did it go?"  Well now that's the question isn't it?
For almost a month Britton has tried to get into every white SUV that resembled mine in every parking lot.  He NEEDS that sameness like the rest of us need air.  It's been a struggle for sure.  So while the thief was joy riding around the city in the car that I was making payments on...  I was telling my son, "momma is sorry, but we don't have that car anymore.  You'll need to ride in this rental."  He was not very happy.  He would open the passenger door and look in.  Close the door, open, close, open close, about 4-5 times.  Then he'd repeat the same ritual on the passenger front door.   Sometimes it would take ohhhhh 20 minutes just to get him IN the car.  Not such a big deal in my driveway, but put that same scenario in the Kroger parking lot.  Yikks!  

So.... I did what any self respecting Autism mom would do, I bought another car, exactly like the one I had.  Trust me, it was the best thing to do.  You might be thinking I did it for him, honestly I did it just as much for me.  I just couldn't do it  anymore.  I couldn't watch his distress over trying to adjust, because really, I had a choice.  After almost 22 years of autism, I get it, I really do.  It was almost physical pain for him to deal with such sudden loss of something that keeps his world in place...I guess it's the little things.

The Dodge dealer assured me that finding a car exactly like the one I had was going to take some considerable time.  So I went looking myself.  And right in the middle of a used parking lot of a TOYOTA deal, there she sat.  My heart sang with joy.  It was identical minus the DVD player.  It was a year newer with only 1500 miles on it and CRAZY CHEAPER!  It is moments like this when you KNOW how personal your God is.  It's not that common, in the Christian life to see the "years restored that the locust has eaten."  Oh happy day.  I am grateful that this was not a battle we were going to have to struggle through.  I just want to say, "GOD is so very good."

A really long time ago, (maybe like 10 years)  I wrote a short article for an Autism Newsletter.  I entitled it... "Oh for the Invisible Life."  What I meant by that is....  When I'm in  Walgreens, and my son FINALLY comes out of the bathroom (from slamming toilet lids for 20 minutes) and his sleeves are soaked from washing his hands, and his pants aren't zipped, and his shirt is tucked in the front and hanging out the zipper.  At that moment,  I wish so much that we were both invisible.  Because no one can SEE HIM, the way I do, the way God does. They only see this "retarded man" who sticks out like a cat in a dog pound.  There is no keeping autism under control.  There is NO making autism just stay calm.  There is no being invisible, like the "normals."  So in case you didn't know it, "YOU are invisible."  No one SEES YOU unless you do something out of the norm.  Which is fine with most everyone I know.  We can be noticed, by extraordinary acts of kindness, or rudeness.  But most of us, we'd rather be invisible. Be honest, it's so much easier that way.  I challenge you...next time you're in a check out line, look around.  Do you SEE the people around you?  Do you ever remember anyone around you?   No?  Just like I thought Invisible.
Disclaimer- (I'd like to exclude all 15 year old girls trying to get the 20 year old check out guy to notice her.  Or the other kind of people, that prefer to have everyones attention, every family has one, you know who you are!)  

 Avatar is one of the movies that Britton always picks to watch.  If I think on it too long I'll just sit and cry.  In the movie the main character is paralyzed, and is able to be placed inside an avatar body and there he can walk, run, jump.  All the things his physical body no longer allows.  HE becomes a "dream walker".  I so often wonder about Britton, and his dreams.  Is he a dream walker?  Honestly, I hope so.  They say that for quadriplegics they often spend more time sleeping and living in their dreams than awake.  And who can blame them?  Life "out here" is so difficult.  Maybe HERE is  the nightmare, and THERE is a reality that they have better control of?  Maybe..
I haven't mentioned it in a very long time, but Britton use to talk.  In case you don't know, Britton lost his language, all of it.  We do hear an occasional word, like maybe 4 a year?  But, before autism, Britton talked early, and he talked a lot.  He was extremely verbal.  He is the kind of person who needs to talk!  I know HIM, I know his heart longs for the ability to be heard, to be understood. 

"I SEE YOU."  I love that line, from one of the main characters in the Avatar movie.  She has some serious things to discuss with her father and so, she walks up and acknowledges him with those words.  It was meant to be a way of saying, "I really know who you are.  Not just what everyone else knows, but your true soul, all your strengths and weaknesses.  People with autism, are really only KNOWN by God.  But wait, ALL OF US are really only known by our creator as well. 
We may feel known, by our spouses, or by our best friends, until some very serious tragedy strikes, and BAM, we feel no one knows us really.  There is a scripture that always brings me peace when I feel no one knows me, understands me...

“You know when I sit and when I rise; You perceive my thoughts from afar. You discern my going out and my lying down; You are familiar with all my ways. Before a word is on my tongue You know it completely, O Lord.” Psalm 139:2-4

How I love knowing that our God knows the word that is on Britton's tongue, even though he can't get them out.  That always makes me smile.  How grateful I am for that one sentence of scripture!  
  
As Autism parents, we are "emotion sensors."  Sensing what no one else can possibly understand.  The connection we've created with our children is almost a form of ESP (extra sensory perception).   We SEE our children, because we have to.  We need to see them as much as they need to BE SEEN.   

Sometimes in prayer, when I'm finally quiet, I'll begin with "God, I know YOU SEE ME?"  And I am certain that,  He knows what I mean.

So when Britton runs down the stairs naked, (always when there is a stranger in the house) takes off his shirt in a restaurant, or walks around with a sock hanging out of his mouth...(No, I have no idea why.)   I close my eyes and I can hear God whisper, "I SEE YOU," and no matter what is happening, I take a deep breath and feel His peace wash over me... cause I know He does.  

This past week I had an amazing dream.  The kind that you just can't let go of.  The feelings that you woke up with linger and you feel God's presence and you know it was His message, His way of communicating to you.  In this dream, Britton, my son was talking.  I don't mean an occasional word, (being defined as two a year)  I mean he was talking to me like anyone else.  That would be a dream come true.  I'm not honestly sure what the statistics are now, but somewhere around 50%
of autistic kids can't talk.  So...my dream, is the dream of many families living with autism.  The last thing I remembered before I woke up was a word spoken to me by a "prophet" almost 20 years ago...Words of hope, that have required faith for a really long time.

 None of the doctors at Texas Childrens had SEEN autism back then, they had diagnosed Britton terminal, based off of a brain MRI and they gave him six months.  They said he would die this horrific death as his brain continued to atrophy.  That diagnosis...it feels like you've been pushed off a cliff and you just keep falling and falling and you never catch your breath.  An apt description, as I would sleep in 20-30 minute intervals, and wake up with my heart racing, trying to breath.  *for those of you dealing with autism, they believe that MRI may be the only existing "picture" of what autism does to a brain at the initial insult.  (For us, the "initial insult" was a vaccine that caused seizures less than 24 hours later and then anaphylactic shock shortly thereafter.)

We had taken Britton to a revival.  Go ahead sigh, roll your eyes.  No matter what you're thinking, you'd do it too.  If your child was dying, and the medical community was stumped.... you'd go.  It wasn't our church at the time, (we barely made it to church on Sunday mornings,) but a friend had begged me to bring Britton.  It seems there was a preacher from South Africa and he was praying for the sick and they were being healed!  My husband was in school more than 40 hours a week, and I worked crazy hours trying to support us, and take care of two little girls and a "terminally ill" two year old.  It was just nuts to go...but I was desperate.  I believed God was still in control, and I believed He  healed... I still do.

The church was VERY crowded.  We were in the back of the balcony and we didn't know a soul there.  I had not even told my friend that invited me were coming, so she wasn't there either.  We were there about an hour when the preacher says, "There is someone here, and you've brought your son and the doctors say he is going to die."  You can imagine, my heart began racing, I couldn't breath....  Long story short, we went down and he prayed for us.  He knew Britton's name, which I've always thought was more than cool. (we didn't know one single person in that building, nor did anyone know we were coming.....we went at the last second.)  He said lots of things that only God knew, and the part that I think on the most is him saying, "You will wake up one day and this will just be over with.  This child, will stand up and be great and powerfully used in the kingdom of God.  An apostle with a sword in his hand."  Now, if you're thinking "Yeah right."  I don't suppose I blame you.  For almost twenty years I've thought on his words and held pretty tight to that promise.  Of course we didn't know it was autism at the time... Funny thing is, I often catch myself thinking that autism is harder for God than a terminal illness.  I guess I just think autism is WAAAAAY HARD!  Feel free to laugh at that, I do.

And that brings me to what the dream has had me thinking about.  Mostly about Faith.  Where is my faith when it comes to autism, when it comes to life in general?  Cause that's what I thought of immediately when I woke up from the dream..."Isn't it our faith that opens the door for God to RSVP with proof?  I just wonder, "do we see so few miracles, because we believe so little?"
Have I not seen the promise all these years because my faith has wavered?  Not questions with easy answers...So the final question on this subject...Is it God's will that we see answers to our prayers?  I ask a lot of questions.  But I suppose the best answer to most my questions would be, "according to your faith it will be done to you." Matt 9:29.  I'm going to leave that there... floating, just think on it.

Have you ever felt like you didn't like the rules?  (more questions) We probably all have... but trust me, I'm not the one God is going to change the rules for.  (Neither are you.)   Since we know his precepts are from everlastng to everlasting, it's probably time I repent of my arrogance and lay my idols down.... again and again, day after day....sometimes minute by minute.
 Apparently I'd rather continue in my God-testing unbelief and demand He still move mountains.  Occasionally He moves them for me anyways... Oh yes, His mercy is new everyday and it's certainly a good thing for human beings...well for this human for sure.

In the autism life,  faith is just such a constant, that when it waivers I think we are acutely aware of it's absence.  It takes faith for me to take my son in public...every single time.  I just never know, the reason being that, the "normals" usually misunderstand most of our interactions.  (e.g. Britton is now touching us on the forehead, well constantly,  About 5-10 times an hour.  There seems to be no changing it, stopping it, reducing it.  I don't know what it means, or why he does it.  I just have to mostly tolerate it.)  How many times has someone walked up and said, "Is something wrong?  Why is he hitting you in the head?"  I've even had someone tell him to stop.  (I'm sorry that's pretty funny.)  This past Sunday he did it through the entire sermon.  flap flap flap, tap on the forehead.  flap flap, tap on the forehead.  I got the giggles at one point.  I kept thinking he looked like a Pentecostal Preacher praying for us.  (sorry pastor)  But I just have to trust that some "well meaning samaritan" won't decide that he has crossed a line and now they should call someone to "assist me" or God forbid, "arrest me or maybe even him."  Don't even think I'm over exaggerating, because it has happened!! MORE THAN ONCE!!!  Oh yeah, it's quite the walk on the tight rope.  "Always juggling, while balancing on a wire." God is the only safety net.

There are times it sure seems to me, that finding God's will in any situation is just not as solid as it once was.  The "safety net" of KNOWING your in His will, seems smaller than before.  (God's covenant with us, the rules, the deal, the agreement, is suppose to be at the least the framework of our safety net.)   In the old testament, under that old covenant,  Israelites only had to go out and check for a cloud over the tabernacle, or a pillar of fire at night.  Seems easy enough.  But what I wonder is, did it make obedience any easier?  Does knowing what's right and wrong, seal the deal for us?  (The same people who crossed the Red Sea on dry ground, who had drunk water from a rock, who had manna in their bellies...got bored or rebellious or jealous or something.  Then they apparently forgot all about their God and ended up dancing naked before a golden idol of their own making.)  YIKKS!
They seem so ungrateful, and yet...  How many times have I worshipped at the feet of the Big PHARM God, praying that somehow "it" would be the answer.  Please know... I'm not condemning any of us who try/use medications.  God gave many of them to us, we just need to KNOW who our Healer is, Jehovah Rophe!  I am so grateful to God when they work, and so sad and disappointed when they don't.  Like most Christians, I pray, I trust, I take that leap of faith... most the time it feels like a free fall.
The other day as I watched that man jump at 24,000 feet and free fall for over 4 minutes, I thought..."You need thrills, you need life on the edge... hey just have a child with autism.  Your whole need for all that can be fulfilled on a daily basis.  Every single adventure into the public will give you the adrenaline rush you apparently crave.  Walk into a grocery store with a 150lb man with autism....FREE FALL....
BUT there's always the dreams, and the faith... the very substance of things hoped for.  I close my eyes, take a deep breath...and JUMP!

You want to bet?
The only Autism support group I ever attended was so depressing.  I went 5 weeks in a row.  It was the early 90's, and autism was such a new diagnosis.  I went thinking that autism, was autism.  That "most" the kids didn't talk, that they all had difficulty with stimming, seizures, OCD.  They would all be like my son.  But what I found was, that all the kids weren't the same.  Lots of kids talked, lots of kids really functioned on a much more normal level than I had any hope for.  I kept thinking that eventually I would get some encouragement from going to these "support" meetings.  I listened week after week as these parents complained about how their children played video games nonstop. Or how they wanted to read the exact same book every night.  Not that any obsession doesn't get old and draining, but I dreamed for an interest in anything besides self stimming.  I was amongst a group of people who still didn't understand "my autism world."  I felt, autistic in that support group.  Lesson learned, at least I could leave and never come back.  Something my son has no choice about.

I keep thinking how the plan here always comes down to the same question...Will man (or in my case woman) believe God or won't I?  Satan swore that Job was "conditioned" to love God because of all that God did for him.  Take away the gifts/rewards and Jobs faith would crumble.  It was a very serious wager, one I think on often.  Take away my sons future, his health, would I still serve God?  The wagers put Satan's theory to the test.  Most Christian families of autism feel they are living out that "wager."  Will the family serve God anyway?  We don't have the luxury of looking behind the scenes and seeing what's happening in the heavenly realms.  We cling to faith and believe that the thousand hard and easy choices we make day in and day out matter!  For me, it has seemed that when faith is LEAST likely, that's when I need it most!  
It is a remarkable truth to all believers that our choices matter.  Not just to us and everyone around us, but to God Himself.  It's like God has granted us the gift, to ordinary people, the right to participate in His amazing plan.  One of my favorite quotes is T.S. Eliot, (also one of my favorite writers, some people think he's a little strange) says, "I had far rather walk, as I do, in daily terror of eternity, than feel that this was only a children's game in which all the contestants would get equally worthless prizes in the end."  God has not promised us worthless prizes...but no more sadness, grieving or tears and above all, eternal life with Him.  He truly bet everything on us!

One of the worst moments of my autism life is a situation where understanding between God and I, well it just didn't exist. (FYI- God and I have had some bad moments:  spinal taps, anaphalatic shock, seizure cycles, not breathing, experimental surgeries, central lines, epilepsy monitoring units and experimental drugs, etc etc.)  Please understand that I am not proud of this moment, I'm just confessing that it happened.  (I'm certain Job wasn't proud of his story either.)  
I'm in the waiting room of the Occupational Therapist, (one of hundreds of therapy session autism requires) and in walks a mom and son that went to the same private school as my son when they were three, four, and five.  (Her son was also asked to leave that school when he turned five. That school wanted their statistical success rates of how many of their students mainstreamed into kindergarten to be impressive.  Bottom line, the slugs had to go!)  She sits down, says hello, and begins talking to her son.  HE begins talking back.  I am in stunned amazement.  I say, "Oh my goodness!  He's talking, what did you do, how did you get this miracle?"  (I asked) "Oh," she says, "my church prayed, and we prayed.  You should pray for him, go to church and ask for prayer."  

One of the most time stopping moments EVER!  I promise you I sucked all the air right out of that room.  I was paralyzed.  My mind reeled!  (Someone should've kindly reached over and closed my mouth.)  Now in her defense, she was honest.  I asked, she told me!  What happened inside my heart was brutal ripping and tearing.  (Please understand that I was elated for my friend and her son.  I just didn't understand, "why not us too?")  
I took Britton's hand, and marched out to the car without a word.  I put him in, buckled him up, turned on the radio,extra loud... and then I turned around and I SCREAMED!  I screamed, I cried, and raised my fist.  I was beyond devastated.  The betrayal I felt at that moment almost took me.  Betrayal, yes, complete betrayal!  God and I had quite the conversation that morning.  He listened, I cried and I yelled.  He listened.  I shook my fist at Him and accused Him, He listened.  It was almost 4 years before I spoke to Him again.  (I refer to that time in my life as "my dark years.")  Oh I went to church, I did the "right stuff," but my "heart was far from Him." Oh how difficult it is for God to get through to someone so broken.  The betrayal of the "contract" I had made with God years before, seriously broke me.  It was a long time until I realized that I had made the "deal," and God had never signed my contract.  

So let's do it, let's talk about "my contract." I'm still not very comfortable with talking about that misunderstanding, but...It went something like this.."If I serve God, live by His word, do my very best...He will take care of me and my children."  Now there's nothing really wrong with that, except...we live in a fallen world!  Stuff happens.  Stuff that would not be God's choice, and certainly isn't His doing.  Does He help us when it happens, YES!  Does He care, YES!  Does He give us beauty for ashes, that's a resounding YES!  There are even times we get to see it on this side of heaven!  But that was not how I read the contract, did you?  I'm no theologian, I'm just telling you how I understand...no I don't understand it.  I'm explaining how I accept it.  (I'm gonna add, that God is Sovereign no matter what I'm willing to accept.)  

Most of us learn that our belief systems are flawed pretty early in life.  Add in a tragedy and you can be shaken to your very core.  Be it death, divorce, autism, It's in those moments, you find out what you KNOW to be true about what you believe.  Will your faith hold you, sustain you when it's all there is?  You and God, and He's, well...silent.  I've seen so many families lose their faith right at that pivotal moment.  I'm always thinking, "Well played satan.  You know this game so much better than we do.  It's because He knows the word, and He knows our weaknesses!"  Then there's usually the "well meaning" Christian who will tell you how "all things work together for good."  Please don't say that to someone when they're in the bottom of a pit!  It's not bearable, you cannot hear it from there!  It can be the nail in the coffin. I've been told that more than once by a friend who was devastated, by a divorce, autism, or sickness.  That's not the scripture that gives medicine to the soul for most.  (my experience) 

As hard as all that is, if you stubbornly cling to your faith in a time of hardship and you pray more than you ever dreamed you could pray, you are proving with your life that you believe there is more going on than what can be seen.  That behind the scenes, in the spiritual world there is battle!  It's your prayers adding strength to God's heavenly host.  It takes great faith to believe that, to live that!  And faith to believe that you are NEVER abandoned, no matter how distant your God seems.  My mind shifts to Daniel praying day after day for God to send help.  When the angel finally shows up, (21 days later) he tells Daniel how he was dispatched with the very first prayer, but had to fight his way through.  I LOVE that story.  Cause it tells me, my prayers matter in my situation!  Prayers really do change things for all of us!  

Sometimes I'm stunned when someone tells me they've been watching my family and it "blesses" them.  I often wonder how.  I've decided to leave that in God's hands.  There are times I'll be so overwhelmed and I'll  think about everything, not just autism, but all of life's difficulties for everyone I know and love.  Is it all really one, great, big wager?  Then I'll imagine myself in a boxing ring, satan on one side, (yep red boxing shorts, pointy tail, horns.)  Me on the other side, (wings on my back of course! NOT)  God rubbing my shoulders...He leans down and He whispers, "I bet on you." Then the bell sounds...

On the Autism Road...
From week to week it is amazing what you see on the Autism road.  It is a road after all, a journey
where the destination is completely obscure.  This road is certainly a forceful agent of change, with it's detours, dangers, and unfortunately disasters on a regular basis.
I read all kinds of books, but my favorites are science fiction.  I like to take all kinds of "journeys," if not physically, I enjoy it in my minds eye.  I recently read a lot about time travel.  About how Einstein proved that you really could, if traveling as fast as light, move faster than the hands of a clock...forward or back.  Now there's a thought, oh what I would change if I could go back in time.  How about you? Do you know the ONE EVENT THAT ALTERED YOUR LIFE?
Last month I did a bible study on the life of Paul the Apostle.  He too was traveling down a road.  He was on his way to destroy the men and women who claimed to belong to "The Way."  (The name given to those we now call Christians.)  It was on this journey that the Lord is said to have struck him to the ground, and gave him quite the talking to.  The moment, that altered his life and changed the future of Christianity.  Paul's journey was anything but easy, and it didn't end well by earthly standards.  It was certainly full of detours, dangers, and lots of disasters.
Though I wouldn't compare my life to Paul's, and certainly not the results he achieved... the similarities are certainly there.  What I mean is, that difficult journeys are common among God's people.  It seems that we are made to travel.  Isn't the appeal of the pilgrimage, to change us over the course of the journey?  If I could go back in time, there are lots of places I would visit.  I can easily imagine myself emerging at the end of some dark corridor, in a different time, a very different person.
I often wonder if my son does the same thing.  Does he imagine himself somewhere else, at some other time?  I really hope he does.  We all need a way to escape for a few minutes, and being locked inside a very disabled mind/body is more challenging than most of us care to think about.
My son, Britton's favorite place on the planet is Kauai.  We stumbled into knowing that, in a very strange, roundabout way.  One of my clients, years ago, reached her goal weight.  She and her husband were going to Kauai and she invited us.   It was an unbelievable blessing at the time, but we had no idea how far reaching it would be in future.  How that one short journey would begin to shape our sons life, and in turn ours.
We loved Kauai so much that we began to take the whole family.  We save like misers all year...  we save points, and reward miles, we do whatever we can to make it happen.  It became so very important that we have been known to sell things to get there.
From the very first trip a sort of miracle happened.  Our son spoke some words to us.  That may not seem like much of a big deal to many people, but Britton doesn't talk.  I mean, nothing, zero, zippo!  But in Kauai, he would say things like, "hurry up," "let's go," "let me,"and once, "I don't want to." They are enough words now, that I've begun writing them down.  My small attempt at trying to know who he is on the inside.  No matter how many or how few words we hear, we are always stunned, and amazed.  We never have known this, had we not taken the ridiculous chance of flying him across the Pacific Ocean for eight hours.  (If you have a child with autism and your wondering, "are they insane?" Yes, we are.)  Now of course, we do it every single year.  It's always scary, it's always a risk, and yet the pay off is maybe four or five words, and to us it's worth it. (What's the risk you may ask?  Well when someone with autism is frightened, or confused, etc, they go may go ballistic!  Picture that on a plane!)
This year we did some crazy long hikes.  Little mini pilgrimages I guess you could call them.  They make Britton so happy that we hike almost every day.  Not just a few hours, we're talking 8-10 hours, all day long, every single day.  Our favorite hike is the Kalalau Trail.  It is one of the most beautiful places you can imagine.  Volcanoes along some of the most beautiful beaches and azure ocean for miles.  Our favorite hike is about eight hours, but you can hike for weeks, or months if you want to go further.  The interesting thing is, on the top half of the hike you find all kinds of discarded items along the way.  I have always wondered what those items were doing there.  Flip flops, bed rolls, cans of food, a pair of swim trunks, socks, almost anything you might be backpacking can be found up on the top of the hike.  This past visit, as we hiked down, two young men came along having been hiking for weeks.  I noticed they stopped and picked up a few of the items, which apparently they had left on their way up.  I also noticed that their packs were practically empty.  So I asked, (cause I'm curious like that) and they told me, that they started with "weighted down packs."  They had obviously eaten a lot of it, but "the truth is," they told me.  "We thought we needed all that stuff, but as the journey got difficult, we realized what items really mattered, and would get us to the end."  Boy did I understand that statement.  Everything that hindered, anything that held them back, or weighted them down--it all had to go.
So very like our autism pilgrimage.  The list of things I use to think were important, are almost laughable to me now, so much has been cast by the wayside.  The months, the years, even the minutes that autism is extremely heavy, it is important that I carry less.  By the same token, I pray that my "autism muscles" get stronger. I know that my heart finds it easier to let go of the things that have to be cast aside.  I can't say they never hurt, things like, going to see my aging parents as often as I should, or even going to help my daughter take care of our grand daughter, or even working in my church the way I did in my "other life" before autism.  Things that I just cannot carry at the same time as I carry autism.  I use to pray that people understood, now I know that they don't. The good news is, I don't expect them to.   But the concern of that is also something I have to let go of, and know that God does understand.  He wants me to the finish the journey, He wants me to choose carefully as I lighten my pack.
People have gone on pilgrimages throughout all history.  The destination is indeed important, but it's the journey itself, the physical act of going and doing what we have to do, that transforms us.  If there is to be any transformation of the spiritual self, that change would take place not when we have arrived at our destination, but in the long, hard work of the journey itself.
What happens in us on....THE WAY.

Autism Over the Years - Should I share this old autism journey with young mothers or anyone else traveling the long treacherous road called autism?  I can't help from turning around and looking back at the masses of families still building behind me.  The best news is that the road has changed so much over the past 20 plus years.  Though the road itself is different, it's still a road of hidden craters, giant roadblocks,  surprising detours and untold stories of heartache.
I guess the thing that's got me going on this new blog adventure is that my son turned 21 last November.  Certainly a milestone in anyones' life, but when you're severely autistic it's more than a turning point.  It's a jumping off place, and the precipice that you're looking down from requires a parachute.  The big question is... "What will that parachute be?"  

I've spent much of my life pushing through misunderstandings, fears and judgements of a condition that had hardly been a blip on the radar in 1991.  Texas Childrens Hospital just hadn't seen a bright, intelligent child with so much language come crashing down...lose all language and most of his awareness.  In 18 months of hospitalizations, and almost every single specialty poking, proding and testing, not one "specialist" had an inkling of what had happened to my son, Britton.  They all had a drug we could try, but they all did more harm than good. (e.g. high doses of Depokote melted his hair)

Not many families have walked this road before me.  Not too many tracks in front of me lead the way.  I wish I had a map, a GPS, honestly, I'd take anything that would give me direction of where we go from here.  Mostly I cling to a book full of Jesus' words of hope and encouragement.
What I've found so far is that the world just isn't ready for adults with Autism!  I know this because my son goes with me or my husband everywhere.  The staring, the comments, the fear all pile into one big reason I should just realize that the "public" does not want autism in their midst.  Most of us fear what we don't understand.

I tried something new this summer.  Well, the truth is,  I just wanted to "help" people stop staring.  I put autism awareness t-shirts on my son before venturing out.  It was an interesting study in human behavior to say the least.  My son seemed to enjoy it.  It explained things and so, he seemed to feel comfortable that people at least knew why he flapped, or hummed or made loud noises.  It didn't stop the comments though.  (To the woman in Schlotskys who asked me, "Is he retarded or something?" Seriously?  Shame on you!)   I am still amazed that people can be so cruel and have so little patience for those who CANNOT conform to society's idea of "normal!" (To the moms out there with your young children staring, YES, tell them not to stare!!!!  It's NOT okay, it never has been and it never will be.  Do I really need to tell you that?)

How often I've wished to be invisible!  But as another autism mom said to me recently, "I always feel as if there is a giant spotlight following us everywhere we go."  No kidding.   I'd add to that a foghorn to announce our arrivals and departures from all public places.  My son has currently begun to have a new "stim" with the bathroom.  You wouldn't think that would be so bad, but he's male and I'm female.   I can't go into public restrooms with him.  I stand outside, trying to stay calm while I pray, "Please Lord, help him keep his clothes on!  Please don't let him touch anyone and upset them!  Please let him come out before SUNDOWN!"  These are all scenarios I have had to deal with before!  It's not something that many people can relate to or begin to understand.  (To the many men, yep, total strangers that I've begged to step into a public restroom and check on my son, God bless you for your help!)  Autism changes with the years, but you just have to become more creative and grow bigger "autism muscles."

Maybe society needs a REAL picture of what autism looks like? (see my pictures)
Is it like Dustin Hoffman's Rain Man, or Kiefer Sutherland's son in the weekly series, Touch?  That's not an easy question.

Autism comes in all shapes and sizes, all genders and all races.  The truth is most everyone has been "touched" by autism in one way or another.  For families of autistic children, touched just isn't a strong enough word.  I'd go more for body slammed, or maybe even crushed, as a more apt description.  I read a book once, By the Light of the Moon, by Dean Koontz, where one of the main characters had autism, and he could basically do magic because of it; sort of like an Autistic Savant, but with some Harry Potter flare.  I loved it.  How I wish that there was some magic gift that would be big enough to redeem my son from so many behaviors that are, well, not easily redeemed.  But until someone hands him a magic wand, I'll be reaching back  for the only parachute that  I'm willing to stake my life on.  (Proverbs 3:5, "Trust in the Lord with all your heart and lean not on your own understanding...")  Boy, oh boy, how often have I repeated those words? More often than I can remember of course.  You too?  So, where do we go from here?  What happens after 21?  I'll keep you posted.  :)