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.  :)