CLIMBING THE AUTISM MOUNTAIN

As Autism Awareness month trudges its heavy burdens back into what is mostly obscurity, I wonder are you more aware?

I wonder, what does awareness mean to those who are afflicted by it, and those of us that live with it every day? Not only during awareness month but every single minute of every single day.

Does it mean understanding that It is a MEDICAL condition? Wouldn’t that be a good start? 

Does it Mean being able to list the symptoms: 

“performs repetitive movements, e.g.rocking, spinning or hand flapping. Delayed speech, difficulty with eye contact.

Some of the unexpected things, like inappropriate social 

Interaction, sensory sensitivities, tics, epilepsy, gut dysbiosis. 

The infamous, pans/pandas or more specifically autoimmune encephalitis.  

What do all those “conditions” mean? Where does a family go from there?

Not one of us has a PROGNOSIS for our child’s future…because like it or not, admit it or not, autism is relatively new. 

Somewhere in the 1980s the numbers began to rise, but before that, it’s very difficult to find anyone presenting with these same symptoms.  

When Britton was almost two, I sat in a medical library searching book after book trying to find anything that matched. It was 1992…I found ONE child who had regressed…from his childhood immunizations. Yes it actually says that. It’s dated 1956.

There was no internet for me, no support groups, no one to say this is 

What happened, and this is how you help him. There was only confusion, fear and loss. Mostly there was a terror as I watched my son sink into the depths of a condition no one had seen before. My son’s pediatrician asked me, “How does it feel to have the entire medical center scratching their heads?” I said I feel a panic I can hardly contain. I had one question, WHERE DO I GO FROM HERE?

                                                                          

No matter the debates about the cause, one thing for sure, this is the first generation to deal with AUTISM no matter what you call it. (Some are lucky enough to call it a gift, others barely have the strength to see over the tragedy it has brought to their lives.) That being said, where does autism fit in the current society?

We have no idea how it’s all going to pan out. There really aren’t many who have gone this way before. So far, autism continues to rise. If we don’t ADMIT or at least truly open our eyes to the cause that every parent SCREAMS is the truth, then soon the 1 in 36 numbers will be 1 out of every 2 that have autism…there will be no one left to care for anyone.

When Britton was small I had every belief that he would improve...that if we could try every possible intervention we could dig up…spend every penny we had…THEN HE WOULD GET BETTER.  No, the doctors told me he wouldn’t, but they diagnosed him with many things before at the age of four, a strange physician at the Mental Health Institute, called it autism. I didn't really grasp the extent, nor the meaning of the word.

The first kids seem to have received the worst of it. Maybe it was the pharmaceutical industries "first try" at just how much their bodies could endure? Yep merely parental speculation, but their flood of recent propaganda has certainly not gained them any trust in this tribe.

The thing I am most grateful for now is that when a momma calls me for help, I can say, go to this website, read this book! Recovery happens, it’s possible…HURRY! 

When my husband and I use to talk about recovery we did so in whispers. We got big-eyed stares and even laughs behind our backs. I remember the first doctor who ever gave me hope…He said, “Remember if one child has recovered, that means RECOVERY IS POSSIBLE!” I spontaneously hugged him.

It was a breath of fresh air…maybe it was the first time I breathed. All the doctors who sat bug-eyed, wrote in his chart, “prognosis guarded.” Yep being one of the first was not something I would’ve chosen.

                                                                                

Without one ounce of recovery no matter the efforts and the thousands of dollars we spent, by the age of 25 we had seen zero progress. Suddenly in 2015, he began to recover. Oh, how I wish I knew what “magic treatment” granted that reprieve! It lasted almost a year. All aggression was gone, my clear-eyed son even repeated a few sentences. He laughed a lot, he typed his thoughts constantly, he hummed to music. I’ve never EVER been so happy.

Then seizures came in the wee hours of a Sunday night and began sucking the life out of him. Like a bully that taunts you with the thing, you have spent your whole life begging for…Britton began to slip farther and farther from us. Each day, each month, each year passed…and I reached and I prayed and I begged…He hung from a cliff with no bottom and we held him by the fingertips. 

His medical condition began deteriorating so rapidly we got whiplash watching it. 

But the lessons I learned during that year…oh, the valuable, valuable lessons. He taught me a lifetime of truth in mini-mester. He taught me to never ONCE believe that a person with autism is not “IN THERE!” That I had always treated him like he didn’t know how to do things, or understand things. Did I mention he took a college class on Quantum Physics that summer? Did I mention he helped me begin to write a book that he is the main character in? Did I mention he told me he loved me many many times? 

Losing him, again is the hardest thing I’ve ever ever done. But he didn’t leave me empty-handed. He left me with knowing, and understanding that I could’ve never had any other way.

                                                                         

He is 100% totally intelligent, and so painfully aware of his condition. 

Always hyper and high energy his entire life, he now sits, with just enough strength for reading books and watching movies. Ever since the seizures increased, and the subsequent shoulder dislocations from the powerful muscle contractions. Like cruel abusers, they beat him into submission. At the very least, the pain, the fear, and the unknown changed him. He sits, he lays, he seems so tired of living. It's hard to separate fatigue from despair, or both. 

There are so many young men and women in their 20's on the spectrum. Because we are the front of this population, most haven’t really dealt with where they could work, where will they could live…where they can find purpose…or as Britton typed, “where can I fit?” 

I stare at young mommas and tremble, shivering for all the years I know are ahead. The pain, the hopes, the possibilities. It rumbles through my mind, and I swallow down so many wishes and a thousand prayers for each of them. 

But we are learning, parents are pushing, begging and finding the healing their children need. Like climbing a ladder up the tallest mountain while dangling off that cliff, parents climb. The government takes away the ladder, we climb, the doctors tell us there’s no way up, we climb. The world watches and judges how we climb…but we climb anyway. 

Sure we are frightened, it’s scary as Hell. We can’t use both hands on this climb, because we hold our children on our backs. 

But God strengthens us with a power that is not of this world. That power is love. God encourages us to climb. God shields us from the judgment of others, and cuts steps up the side of the mountain and then nudges us to climb. We get knocked back, we slide down, we are often so battle-scarred only other climbers recognize us. They, the other climbers, throw a rope and pull us up when our arms fail us. They shine a light when it’s gotten too dark to see, all while climbing with their own child on their backs. 

This journey has created an army, made up of ragamuffin parents, who may well be the toughest climbers this world has ever seen. I expect it is the image of God in us that so enrages Hell. It is why the demons hurl their mightiest weapons at us. 

These parents won’t quit, they won’t give in, and it’s a rare occurrence to see one of these climbers give up. It’s a superpower of strength that is definitely not from this world

Autism is not our superpower, love is. 

                                                                               

The Rumble of Encouragement

Do you hear it?  I'm pretty sure that is the rumble of my life falling apart and landing in heaps all around me.  Yep the last few weeks I've been juggling with the pieces of my world, trying to see how many I can throw up in the air and still catch.  I thought the rumble was the result of not enough hands.

When my mother began telling me how weak she felt, I hadn't paid more attention than normal.  My mother has had kidney disease all my adult life.  But when the weeks passed and she couldn't eat and she couldn't stay awake...alarms were going off inside my heart.

By the following week, I got a text from my sister.  "I just called 911!"  Mom has struggled with only part of one kidney for... EVER.  If only insurance didn't control medical care, she would've had dialysis about once a month for the last 10 years.  But insurance won't let you have dialysis unless you need it three times per week.  Who cares if there are special cases.  Coverage is based off of statistics, they do not care about actual human beings.  I'm sure most of us wonder when doctors no longer got to diagnose patients and decide on their treatment.  Now, nurses who work for the insurance companies decide the patients fate over the phone.  Based of course, off statistical probabilities of best outcomes.  It might sound good to your pocket book, but I promise you when it's a loved one, all the sudden you aren't as concerned about those statistics.  As Charles Dickens wrote,

“If they would rather die,” said Scrooge, “they had better do it, and decrease the surplus population.”

As the days wore on, I struggled with the truth that I should be with her.  I want so much to be with her.  But there is no one to care for my son, my 27 year old son with autism.  My oldest daughter graciously stepped in and kept him for most the morning, and my sister in law kept him all the afternoon.  My husband closed our business so I could go.  It really takes a village.

Only two very long years ago, Britton was doing so well he could've gone with me...someone would've helped me because he was easy to have around.  But now, now he struggles just to get out of bed every single day.  The contrast is definitely like night and day.  Like good and bad... like faith and hopelessness.

It appears to be a combination of physical pain he suffers from his failed shoulder surgery, his fear of seizures, his nonstop OCD issues, and now there's the debilitating depression from all the above.  But I know he is a brilliant young man, knowing that is a gift and a very sad curse.

With autism, most families assume their children have a 2 year old mentality, and treat them accordingly.  I did too, for years.  But in 2015 when Britton began typing on his ipad, there was no mistaking the fact that he was highly intelligent.

It's so awesome, and yet the dilema it creates tilts your world sideways.  The behaviors now, are viewed so differently.  Add his depression, and despair, along with the pain it's all about buried him, buried all of us.  He seems to have decided that "being autistic" is far easier than the responsibilities that the truth of his intellect now require.  Being more "normal" is hard work.  He just can't do it when his mind clouds from autoimmune encephalitis, his gut swells from crohns disease, and his shoulder aches constantly from the damage of 30+ dislocations.  The treatments for each condition has problems of their own, and none of the treatments cure, they just help.... maybe.

When he grabs my arm, growls in fury and pinches the daylights out of me, cause that's what you do when you have no way to communicate.  I know it's because it's so much easier, and faster to relieve your frustrations than picking up your ipad and talking about it.  But now, mom expects far more and then she has the nerve to tell you to act your age, and she means it.

But autism is one of those crushing, soul draining conditions.  It claimed my son when he was 18months old.  The monster came in the darkest part of the night in the fall of 1991.  It clamped down on his tiny body and drained him of his vital essence and left a black venom in it's place.  It ate holes in his brain and then made him swallow the venom so it could chew on his intestines and leave them bleeding and porous.  The end results were devastating, life altering, and smothering.  His precious baby spirit began fighting to survive.  It changed who he would become, what his choices would be, and how the world would see him.  It changed everything.

The last year it's like watching him sink in thick, strangling quick sand.  I've got a death grip on both of his hands, but our fingers are slipping.  It's so much harder to fight when he just releases my fingers and looks at me with tired eyes pleading.  "Just give up, let me go."  I really don't know how to do that.  He's my son, there is no quit in me.  There's frustration, and crying til I puke.  There's nights of terror, as I prop him up from too many seizures making sure he's getting enough air through all the gurgling sounds.  Those are the moments I wonder if by refusing to let go, we may both will go down  together.  Outsiders will judge my situation and wonder why I keep trying.  Others will point fingers to tell me how I've failed.  Worst of all I myself believe I've failed and condemn myself for not doing more, trying harder, thinking I need any kind of life at all.  I begin to feel guilty for being human.

As the pressures have mounted and mom has walked back and forth from this world to the next.  I've never felt so much like giving up.  My poor dad is suffering with vascular dementia and he makes the situation about a million times worse than it already is.  He can only walk at a snails pace, can't hear, he can't see.  He misunderstands everything said to him.  He will argue with a stick over the most basic of mom's care.  He accuses male nurses of oogling my 80 year momma.  He himself basically asked a nurse to "give him a sugar."  I'm sure you want to laugh, I would too, EXCEPT it's my daddy.  Oh the fun of growing older.

I prayed the entire 500 mile drive home after getting to see my mom.  I cried til I couldn't drive, so I had to pull over and empty my despair onto the side of the highway.  My mom, my dad, my son, Jesus help us!  If ever I thought I had control of anything, the truth of how powerless I am is in my face.

Then I heard that rumble again, and I waited for the pieces of my life to crash all around me.  When I could still hear it,  I finally asked God, "what do I hear?"  I could feel His presence and I knew He heard my question.  I believe he replied first with this scripture,

"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us." Heb. 12:1

I saw in my minds eye... a stadium.  A packed stadium full of people.  I saw two brother-in- laws, a friend's daughter, a dear friend from my teenage years.  I saw a lot of people who have gone on before me.  They were cheering, calling out my name. "Teresa!  Teresa!  Teresa!"  I opened my eyes, looking around expecting to SEE them right beside me.  Calling out, "You can do this!"  "You've got this!"  "Let go, you can trust God!"  

Then, this scripture of encouragement came rolling through my mind.  

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." IICorin. 12:9  

So this blog, this is me boasting about my weaknesses.  I am weak, but HE is strong.  How grateful I am that I'm not an only child.  My siblings have shown up one after the next to help my parents, to be there, to support, to show their love and concern.  My oldest sister Brinda, lives close by so she has borne the heaviest part of being there.  Being with mom is the easy part, managing my Dad's unpredictable behaviors is a much harder condition to cope with.  On the elevator Dad talked to me about "his daughter Teresa, and what she had shared with him."  It was a true story, I remembered it.  But the daggers of his memory slipping so far out of reach stuck in my gut and I really haven't been able to remove them.     

My brother showed up and we all hoped my dad would calm down, but he seemed to rile up and feel almost threatened like two rams butting heads; sadly there was more conflict.  He went so far as to tell my brother, "I'm not afraid of you."  Eventually when Dad lost it completely and my brother did the most amazing thing.  My Dad is a small man, and so my brother engulfed him in a giant bear hug and refused to let him go til he understood how much he was loved.  It ended in sobbing, and it seemed to clear Dad's mind.  Love  is indeed all powerful.  

•  "Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5It is not rude, it is not self-seeking, it is not easily angered, it keeps no account of wrongs.…" ICorin. 13:3-5
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There is much good that comes from so much suffering.  I admit that have complained to God countless times that I wish suffering wasn't such an effective tool.  He listens and I'm certain he pats me on the head and nods as He says, I felt the same way, all the way to the cross.  

Whatever I'm going through,  whatever you are going through... no matter how much, no matter how hard...no matter how long it lasts.  There is the huge crowd of witnesses, cheering us on from the celestials.  Watching, encouraging, and knowing exactly how we feel.  They are in the stands, waving banners, yelling scripture, pointing the way home, yelling our name!  

But Jesus, our Jesus is on the field, because after all, when we are in battle, He is right beside us. Helping us to lift our sword, reminding us that we are never alone. Assuring us that it doesn't matter what we are capable of enduring, He is more than enough. The God of Angel Armies, the King of the World!  This battle that I feel has buried me, is nothing more than a small skirmish to Him.  He's got this, I can rest in my faith.  He is the commander of Angels that can take down hordes of the dark ones with a nod of His head.

Even going so far as to send someone to embrace me in a giant bear hug til I know, I am  loved.  

WEEDS!

"Gratitude is Happiness doubled by wonder.  

Dandelions, Chickweed, Broadleaf dock... all weeds common to Texas.  Not to mention all kinds of grass that will grow everywhere but your lawn.  Today I was pulling weeds and the truth is... I had walked out the backdoor in order to get control.   I needed to breathe, and just cry away from all human contact.  I leaned down and as I yanked and pulled on invader grasses, I watered them with a thousand tears.  My emotions finally poured out and I inhaled the calm of my garden, I knew that God absolutely sent weeds for a very good reason.

WHEN WE LOSE ONE BLESSING, ANOTHER IS OFTEN MOST UNEXPECTEDLY GIVEN IN ITS PLACE.  

C.S. LEWIS

Weeds come in so many forms in our lives.  What would you pull up by the roots if you were able?  A really bad attitude about someone or something?  Maybe a relative that makes the entire familie's life miserable?  For me it's not just autism, I apparently have an entire "Honey Acre woods" of weeds that need pulling!  What if like a weed you could take them by the nap of the neck and escort them into the big green plastic yard bag?  Would you do it?  Is the situation you're battling bad enough to seriously pull it by it's roots and smother it in a trash bag?

There's always round up?  Right?  I mean you COULD take that hideous chemical, that poison that kills brain cells, causes cancer, and laces our water supply... and spray away the "weeds" in your life!
Would it be worth it?   Sometimes it's best to just let those weeds grow with the zucchini?  If you pull them out, you might just pull out the one thing that's keeping the squash vine borer moths from eating the plant from the inside out?  I grow dandelions on purpose.  Yep, on purpose.  Cause the bees just love them, and when they'e done blooming I can seriously just push them down in the soil.  Then I plant smelly marigolds to keep lots of bugs and mosquitoes away.  Yep, those ugly (might as well be weeds) marigolds are well... GOLD when it comes to keeping bugs off!

"If we had no winter, the spring would not be so pleasant."

I'm sure you get my point.  Weeds are not all bad?  So as I watch all the various "weeds" that come on top of autism, I wonder?  Pandas is of course the weed that I'd like to poison and watch wither into a brown stem that would die before my very eyes.  THEN, I'd pull it out... pour some type of flameable liquid all over it and light it up to watch it burn.  Cheering and doing a happy me dance!  Some "weeds" just gotta go!

Crohns disease is a giant stinky weed that flowers about every quarter.  Taking my finally normal weight son, back down to skeleton size.  That "weed" planted in his gut and then began to rear it's ugly head about ohhhhh 6 years ago?  We didn't know what it was and we had a GI doctor refuse to do a lower GI on him because of his autism.  Seriously?  As horrific as crohns disease is, often I've wondered what's the worse "weed," the crohns disease or, the lack of understanding by main stream medicine?

"No one is as capable of gratitude as one who has emerged from the kingdom of night."

I've started a new journal, that I am calling my "Grateful for" journal.  Today I wrote... I am grateful for weeds.  The reason is... pulling weeds, or just the attempt to pull weeds has made me a much stronger woman.  There are weeds I pull and pull, but my back into it and my entire weight.  Land on my backside in the dirt, having only pulled off all it's leaves.  But the weed looks at least as bad as I do.  Basically it's nothing more than a stick... I tell it so.  I think of that "weed" as we battle Pandas.  We treat, we try new things, we beat it down only to watch it spring back to life days after it was just a stem.  The hand flapping and the anxiety rise to a monstrous level and we grab the weed whacker and go to work.  All kinds of drugs, in huge cocktails trying to balance that and not cause his gut to flare in rebellion!  Sweaty, stinking, and exhausted we at least beat it down to an ugly stick... at least for today.

It's been a wicked summer and honestly it's technically still spring.  I was thinking as the Summer Solstice is only days away... "weeds love Spring, but they dry up and shrivel a lot in the Summer heat!"  I live in Houston, when it comes to Summer heat we don't play around!  When I think about those awful 100+ heat indexes on the horizon... all I see is shriveled weeds.  Perhaps Summer will shrivel away Pandas, at least for a season?

During that time I will sleep more. (Please Jesus!). I will recover my "weed pulling" muscles.  I will be ready.  Cause Fall will bring an entire new breed of weeds to contend with.   I googled which weeds are most beneficial to my garden, and was surprised by the answers.  Most weeds will enhance the nutrient content of your soil?   They also attract beneficial insects, not the rotten kind.  (Mealy bugs beware, I'm ready for you this year!).   So many of them have medicinal properties.
I read that, and then I cried at how amazing God really is.

"Someone I loved once gave me a box full of darkness.  It took me years to understand that this, too, was a gift."  

I bowed my head and as the tears covered the paper of my "grateful for" journal, I told God that He was just showing off!  Medicinal properties in all the weeds in our lives?  The heartache of suffering, to grow strength of character.  The pain of betrayal to create a clean heart of faithfulness.  The sadness of loss that builds compassion.  All these weeds, these rotten, smothering weeds I want so desperately pulled out of my life... out of my heart.  Just might be the reason that some awful borer hasn't found it's way into my soul and eaten away the good stuff?

So, I am grateful for weeds.  Today, I am grateful and I tremble with the truth of God's "gifts."  Before I finished my "grateful for" entry for today, I stopped to pray that I never let go of God's hand to reach for the Round Up!

Matthew 13:24-43 New International Version (NIV)

The Parable of the Weeds

24 Jesus told them another parable: “The kingdom of heaven is like a man who sowed good seed in his field. 25 But while everyone was sleeping, his enemy came and sowed weeds among the wheat, and went away. 26 When the wheat sprouted and formed heads, then the weeds also appeared.

27 “The owner’s servants came to him and said, ‘Sir, didn’t you sow good seed in your field? Where then did the weeds come from?’

28 “‘An enemy did this,’ he replied.

“The servants asked him, ‘Do you want us to go and pull them up?’

29 “‘No,’ he answered, ‘because while you are pulling the weeds, you may uproot the wheat with them. 30 Let both grow together until the harvest. At that time I will tell the harvesters: First collect the weeds and tie them in bundles to be burned; then gather the wheat and bring it into my barn.’”

The "Chicken Exit"

Because faith is the very thing I hope for even though I can't hold it in my hands.  How often it tries to sift through my fingers like dry sand.  It feels elusive, and when I'm looking for the chicken exit, I find my hands empty grasping for anything solid to steady my rising panic.

How often I’ve wanted to take the “Chicken Exit.”  I wanted that exit, so bad a few Friday nights ago. I'm pretty sure I may have even looked around for it.  As autism crawled it’s ugly gnarly claws into my son’s brain; I just couldn't watch it one more time as it ate away his hope.

That first time I saw the sign for the “chicken exit,” I was at Disneyland with my sister.  We had met up to take our elementary age children to experience the magical world.  I’m afraid of heights, and as we waited to ride a roller coaster, I seriously didn’t think I could do it.
When you get to the top, on the left-hand side, there’s a sign for those experiencing second thoughts.  This way to the “Chicken Exit.”  I spun around, and my sister grabbed me.  “Oh no, you don’t!  No chickens in this group!”

This week has been challenging.  Britton struggling to maintain control as more and more OCD behaviors pull him under.  He would be doing well for an hour, and then he would need to touch my face at least once every few seconds.  He needed to kiss me every two seconds.  I'm not dramatic, I counted.  I kiss him on the cheek, assure him I’m not going anywhere.  (Pandas I HATE you!)  It wears on my nerves, and sometimes I begin to tremble with the anxiety.  Then I remember he’s far past his ability to endure the panic that's rising in his overexcited brain.

I don’t know, but last night when it all came to a boiling point… him seriously so out of control.   I began to wonder if we can handle it for all the years that life requires.  My overworked, overwrought mind, for some reason, thought of the “Chicken Exit.”  I know, what a crazy, random thought?  Seriously, if you’ve ever been around when a grown man, already rattled with autism, seizures, and then pandas tortures him til he's hallucinating and terrified, you may wish for a chicken exit of your own.
The autism life is full of rollercoaster ups and downs but you add pandas and your runaway mine train has gone completely off the rails!  I was wishing we were on the seven dwarfs mine train instead of barreling through the darkness of pandas on space mountain.
We use to have a life.  Back when there was "only autism."  But pandas is a sick twisted kind of hell that can't be described, just survived.   I keep wondering if  “adulting” with autism can ever overshadow the twisting, the rise and fall that the roller coaster of pandas adds.   The torture as pandas smothers the adult Britton prays so hard to be.  Britton, he's 27.  Independence is a dream, a far-off dream.   He types about it and cries about it, and dreams of freedom.   But this… this raving, screaming young man who was once the tiny baby boy I prayed for; writhing and willing to bang holes in the sheetrock with his head.  The chicken exit is looking pretty good about now.

What makes you look for the exit?  A cheating spouse, financial collapse, a mistake that you can’t take back?  All those things can make every one of us wish we could run away and assume a new identity.  Maybe worse, pull that 38 out of the safe and leave a really big mess behind.

My next thought... “My hypocrisy knows no bounds!”  Makes me laugh, and then I cry.  Old Doc Holiday laying on his death bed, just given his last rites by a priest.  I mean if you know who he was, it appears that death had brought even the likes of him to the feet of Jesus.  He knows it makes a mockery of the immoral life he had lived.  I could judge him, and yet;  I stand at church and bellow out the song, “You make me brave” wondering the whole time if it’s possible.  I mean seriously, WHO can make me brave?  I don’t like to fly; I don’t like to stand at the top of tall buildings.  I rather spend my life in “safety.”  Okay, I know it’s an illusion of safety, but I’ll take it.  Stand me at the top of a cliff and ask me to jump, I’ll barrel over you to get to the chicken exit.

Oh but autism, autism has beaten, carved, and demanded bravery from me.  Watching someone stick needles in your child, bury central lines to his heart, decide what drugs will be pumped in him, which therapies are best, and even what surgeries he should have.  Brave, well obviously someone had better make me brave.  Tell me I can jump from the highest cliff, or take a ride on an F16 with a test pilot?  If I can have those choices INSTEAD?  I'll TAKE THEM.  I choose all the other things I thought I was afraid of.   None of those 'scary heights" are scary at all when I put them in the light of autism or pandas.  From 11 months all the way into 27 years now, watching my son's suffering.  It’s bad enough that it’s the physical suffering, but the truth is, it seems the emotional suffering is the worst.
Last night after the grabbing, the biting, the pinching; the shaking, and the terror of a “street fight” with his parents, Britton hangs his head with the weight of it all.  He’s barely looked up, as the shame of it hangs on him like a wet sweater.  He knows, we understand and we don't resent him for it.  We tell him we know it’s not possible to control, we love him.   The problem is, he also knows that time is ticking.  That if he doesn’t heal, if he doesn’t get better ENOUGH, what will become of him when we are no longer able to care for him?  Who will buffer his behaviors from the rest of the world?  All I can think of is, where is his chicken exit?

This month, being autism awareness month often makes our life much harder.  People watch Rain man, or now the new television series with the autistic doctor.  It creates expectations of what autism “should” be.  (I just laughed at that because I remember a therapist telling me "you should all over yourself.")  As if we can place those expectations on the abilities of someone who has experienced Neurotoxic insult to his brain?

When I wish for that "Chicken Exit" I'm pretty sure that what I really wish for, is a time machine.  

I go back and stand in that pediatrician's office, and I take a different exit.  This time, after I stand up to explain that I have concerns about injecting all those vaccines into my baby; that he’s had a fever ever since the last one... I STAND MY GROUND.  I don’t let her bully me, NO, not this time!  I don’t go in the waiting room to think over “my decision.”  I walk out and leave.  I change my life, more importantly, I change my son’s life.  But that option does not exist.  All I can do is take the “Brave” exit every single day.  I bravely watch him deal with the possibility that he will have no future.  I bravely watch him writhe in pain from swollen intestines and stomach ulcers.  I swallow down the razors and the guilt in a giant lump as he asks me if Dad can live forever.  I cry a thousand tears when he types “can I have a wife someday?”  You tell me, please WHERE IS THE CHICKEN EXIT?

I’m pretty sure that we are NOT supposed to take the "chicken exits" in this life.  I pray it is never a viable option for me.
Oh, I could find one if I chose to.  I could decide to leave my spouse, let him handle the nightmares of autism alone.  About 96% of autism spouses do that very thing.    I could drop my son at some state facility where he would get minimal care, let's be honest, probably no care.  I could ignore him and instead meet my own needs.  The list of "Chicken Exits" is long.
I don’t want you to misunderstand me.  I’m not judging anyone.  If you’ve met one family with autism, you’ve met ONE FAMILY WITH AUTISM.   What’s right for one, is not right for another.  I just know what my heart, my choices are, the ones that are right, the ones my conscience will let me live with.

It was only last week when all over my facebook feed was a story of a family where the Dad killed his five-year-old son with autism.  FIVE?  Seriously, he was five?  Just so you know, there are families all over this world who will adopt your five-year-old son with autism.  It's not a chicken exit to admit you're done, say you can't do this life anymore and run.  RUN for help, let someone else step in, a few hours, a few days, a month...forever.  

One thing for sure,  if you go and strangle, shoot, KILL  your son or your daughter (with or without autism) you have taken the exit of no return. 

I was reading Hebrews 11, that's the faith chapter...some call it the roll call of faith.  I decided to change some of the wording, to be what a lot of us live within our lives with autism.  Artistic license, I don't believe God will mind.

Through acts of faith, they toppled judgments, made justice work, took the promises for themselves. They were protected from evil governments, judgemental family members, and abusive therapy centers, these families turned disadvantage to advantage, won battles, routed greedy senators. Moms received their children back from autism hell. There were those who, under torture, even from Pandas refused to give in, give up and go free, preferring something better: a new life.  Others braved abuse and whips, and, yes, locked doors and solitary confinement. We have stories of those who were punched, pinched, beaten, murdered in cold blood; stories of those with autism wandering the earth naked, homeless, friendless, powerless—the world didn’t deserve them!—making their way as best they could on the cruel edges of life.

Not one of these families, even though their lives of faith were exemplary, got their hands on what was promised. God had a better plan for them: that their faith and our faith would come together to make one completed whole, their lives of faith not complete apart from ours.

I read it over and over, letting it all sink in.

Because faith is the very thing I hope for even though I can't hold it in my hands.  How often it tries to sift through my fingers like dry sand.  It feels elusive, and when I'm looking for the chicken exit, I find my hands empty grasping for anything solid to steady my rising panic.

I saw a woman with a blue autism awareness shirt on at the Costco yesterday.  All proud of what she supports, and she nods as she walks past Britton and I.  It's been my experience that those who support the "blue lights" and blue sprinkle cookies give their dollars to a cause they fear but have no understanding of.   I suspect that it is a sort of "guilt" offering.  A trade for safety?  Please take my money but keep autism far away from my family.

Young mothers with their sweet babies in tow are terrified of autism.  They all know a "friend" whose child has it.  They hear conflicting information about HOW the child became autistic and they hopefully are frightened enough to do some research.  If they make the mistake of asking their pediatrician they will be reassured that vaccines have never caused autism. (In spite of it's listing as a side effect in the package insert!)  That's the myth that the CDC has paid the medical community well to parrot.  The false dream is repeated by these mothers, til bam, their child is the one in 36.

I want to scream, "STOP TAKING THE CHICKEN EXIT!"  Trust me, it will be one of the best choices you ever make!

It is only fitting that I add that when I read the story of the temptation of Jesus, I am rocked by the reality of all those powerful"Chicken Exits." I imagine Satan standing, watching Jesus be beaten, hand outstretched offering him "the exits."  Again, He must've stood at the foot of the cross and reached up and said just say the word and this ends!  You know those "exits" were kept on the table till he took his last breath.  What would we do if he had folded, given in and said okay?  I can't imagine Jesus ever taking a Chicken Exit.  All of our futures depended on him standing strong.  Though that's an extreme comparison, so much does depend on whether we do the same thing.  Our children, our grandchildren, the people in our tribe who watch, who pray.  There are those wondering if the next blow will be the thing that makes you take the chicken exit... or will you reach through the heavens and clasp the hands of Jesus, knowing He can be trusted to get you through?

I intended to post this Monday, but Britton had a long grand mal seizure from a stand, hit the floor hard and I held my breath waiting to see if the shoulder was still intact.  The six hours while he was unconscious, praying every prayer.  Repeating every scripture.  Those are the moments that the Chicken Exits can look so enticing, aren't they?  As I imagined Jesus on the cross and Satan at the foot of it, making offers no one could refuse... it strengthened me to stand strong. "Because He lives I can face tomorrow."  So today, I turn my back on all those exits.  I look up into the face of Jesus and I'm grateful for his strength.  Today I can sing, "YOU make me brave," and I swallow the hope and feel it wash courage over my whole body.  JESUS, YOU make even me brave.     


Amazing places you can donate to that make a difference.  Take the money you would've spent on blue light bulbs, blue t-shirts, and sugar cookies sprinkled blue frosting... These places REALLY HELP local families survive, and even thrive.  It could be the difference whether one of them takes the "Chicken Exit."  

CAMP BLESSING
A FANTASTIC Christian Camp that Britton attends every year.  They treat him with love and respect.  They try hard to make him feel loved, welcomed, appreciated.  He is so happy when he goes.  Nervous, but excited.  He loves being with young adults close to his age.  He likes to feel like he can hang with the counselors.  It's almost five days that Randy and I can be together.  Eat dinner, see a movie, get a massage.  It feels like the best week of the year.  We KNOW they will call us if there are any problems.  They will watch over him ever so carefully.  This year they had a respite weekend TOO.  What an incredible gift that was.
www.campblessing.org

Autism Rescue Angels is an organization that helps local families pay for situations, needs, difficulties.  Like extra care for a single mom when she is injured and needs more caregivers for six weeks while she heals.  Providing registration fees for others for conferences and training that they couldn't afford otherwise.  They do so many things for LOCAL families; the list is long.  But they HELP.
www.autismrescueangels.org

Happy Someday provides vacations for special needs families who never get one.  RESPITE!  Sometimes families dream to vacation WITH their autistic child and sometimes a vacation for the parents to escape autism.  They are local and exist on the donations of people who really want to help.  
www.happysomeday.com

Plan B

Today I had a difficult discussion about suffering.  About how suffering is a matter of perception.  About how we all suffer.  Life can throw us some serious curve balls.  ALL OF US.  I suppose a few escape, although when you talk to someone long enough you will find out they too have suffered.

We really go from one life event to the next.  We suffer, life gets better or changes.  Then we have some weeks of smooth sailing if we are lucky and then the next season of suffering comes.  It's funny how we humans are, how we compare suffering.  I'd like to believe I don't do that but I'd be lying to myself.  No sleep is a huge source of suffering in my life.  We will have been awake for more nights than either of us can remember and still doing all the things required of us.  Me caring for a severely autistic adult, (my son, Britton) and my husband going to work taking care of people who suffer in other ways.

I feel sorry for him when he comes home dark purple circles, looking like someone strapped a giant sand bag on his back.  He'll drag in pulling that sand bag with him and drop into a chair.  I'll ask, "rough day?"  He'll mumble, "oh it was alright."  It'll take me a few minutes to get him to unpack those emotions.  Eventually, I get the story of the woman who cried because her husband was unfaithful.  The man who is losing everything to bankruptcy, again.  Then the one that really gets him, the family that is taking care of grandma with Alzheimer's and trying to raise a child with autism.  He just sits and stares for about 15 minutes.  Exhausted by the suffering of mankind and buried underneath his own suffering and fatigue.

But that won't last because Britton will hear him and rush into the kitchen cause Dad is home!  He loves Dad.  Dad's his favorite. Dad will use superhero strength and prop himself up and tell Britton he has to change clothes.  They will head off towards the bedroom Dad dragging the sand bag and Britton skipping behind.  Won't matter that he was up all night.  Won't matter that a seizure kept us sitting on his bed till 3 or 4am. Us both hovering, praying Britton can get enough air in his lungs to ease the blue of his lips. Face the color of dark clouds, and eyes rolled back.

That stress of the countless times has wrapped itself around our throats, choking the life out of us like an African anaconda...we barely breathe.  None of that matters to Britton.  He's severely autistic and so it does not seem that he considers the difficulties of life outside his own world.  A few minutes will race by and they will come out of the bedroom, dad changed into shorts and t-shirt, and Britton holding Dad's shoes.  He'll slowly take the shoes and start putting them on.  His second job has already begun and he's not even blinked more than a time or two.  Britton will hop up and down and squeal his dolphin squeal in anticipation of time with Dad. It may seem like only small suffering.  Just fatigue, the sacrifice of anything my husband or I would've wanted...but again small.  Our flesh cries for rest, for time with each other but we have long ago learned to silence that voice.

Then there are the days when the seizures last through the night.  We end up in the emergency room to stop them.  Britton is pumped up with drugs that will stop the seizure now but cause more later.  He gasps and moans.  We hover closer, ever protecting him from a medical world that we no longer trust.  A world that we believe created this suffering.  Most of the medical staff are good and kind people, who mean us no harm.  As a matter of fact, they hover over Britton because they believe his parents might harm him with their opinions of what caused his illnesses.  Some of them try to sneak in vaccines, or drugs they believe will be helpful.  We stand guard like soldiers on the front lines.
On rare occasions, we even attempt some education of vaccine facts, statistics.  But that world is heavily fortified against, "our kind."  We are the brain washed antivaxxers.  Blaming an industry that "only cares for our children," whom we apparently are too stupid to protect on our own.

Britton has not been that happy young man I described in a long while.  Having had seizures dislocate his shoulder 30+ times and two surgeries over the past year, he has withdrawn back into the "safety" of autism.  In that world, he knows how to act.  In that world, he knows what's expected of him.  Before, when he began to peek out into the "normal world."  It was all a mystery, all a world of hope and possibilities.  Once when he first began to communicate with us through typing he typed, "I eat hope like candy.  I eat up the possibilities."  Now I'm afraid it seems like he eats up fear and suspicion.  He doesn't seem to trust ME anymore.  He will take no risks with me.  He rarely types.  I know the arm must heal, but he will type some with dad, with others.  I am the main caregiver.  I am the one who allowed the darkness to descend and I did not save him from it.  It feels like I'm the enemy.  My heart just cracks and shatters as I say that.  It's like a mirror of his pain and his dismissal which is constant now cracks my heart into shards that cut through the rest of me.

I was discussing his suffering this morning.  I was saying that our suffering matters too.  That although I know that there are those who suffer far more, that all suffering matters to God.  We should all care, we should all attempt to stop suffering or at least help if we can. Everyone believes that.  We send money to help abandoned animals.  We support children's hospitals. Hand five dollars to the homeless.  No one likes to think of or even look at suffering.  Have you ever wondered why you don't want to go to that funeral?  Why you avoid visiting the friend in the hospital?  Could it be the suffering you're avoiding?  No one wants to deal with it.  I keep asking myself why.  What is it that makes us avoid those who are in pain?  Cause come on, we will avoid it at all costs.  We even occasionally get angry at those who do suffer.  We panic when they need us, we even accuse those who suffer of trying to "drag us down."  Cause whatever it takes to stay away from it, money, unanswered phone calls...that's what we're going to do.  I've come to the conclusion that watching others suffer, puts out mortality right in our face.  That it screams at us, "THIS COULD BE YOU."   But since no amount of avoidance or pretense will keep us safe from suffering, we rail against it.  Most of us don't manage it well, AND the big thing is, we rather not do it in silence. It's almost as if suffering makes us also feel shame? But we know...all humans suffer, so suffering appears to be part of the plan.

Don't get me wrong, it wasn't the original plan.  It was definitely plan B.  Originally we were going to have only happiness, contentment, and full stomachs.  Originally we were going to live in a beautiful garden and love one another unconditionally and commune with the King of the World.  But we failed miserably, after discussing the plan with a slick talking, fork-tongued garden politician. He talked us out of believing it was a good plan.  So here we are, living out plan B the only option left to us managing an "unfair" amount of suffering. We'd run from it if we could, while we stare at the backs of those who "love us." Running from us like their hair was on fire. That's a sobering reality.

Please understand this is not me blaming, not me calling people out.  I am guilty too.  I have ran when I should've stayed.  I have ran when what was needed was hand holding and a hug of reassurance.  Calm words, a listening ear and just saying that I cared.  One of the hardest things is to suffer in silence.  As if suffering isn't enough, our actions say, "YOU, go suffer over there, so we don't have to look at you while it happens. My life is in a pleasant season right now, so I'd rather not be reminded that other people are hurting."  Yikks definitely not plan A.

This past year I have lost contact with so many people in my life.   I believe that many and frustrated that my tragedy just won't end.  Boy, I sure understand that.  I'm beyond tired of it myself.  As if I have control over how long it will last.  I mean, I always thought all of Britton's illnesses would get better.  I thought when he became an adult that we would've figured out. Yep, that's what I thought years ago...but there really is no prognosis for autism...no one has gone this way before.

Autism by its very nature is isolating.  There is so little understanding of it, and parents are so protective.  People outside the autism world can't possibly understand it, no matter how hard they try.  Thank goodness so many do try.  God bless you for trying.  God bless each of us when we try to understand each other's pain.

At Christmas, I was walking through my neighborhood and looking at an entire block of houses that are still vacant.  Hurricane Harvey ravaged our subdivision with water, mud, and vengeance I had never experienced.  If they aren't vacant the people are living without interior walls, floors, ceilings, appliances.  Blocks and blocks of this in my subdivision.  Then come to the next block and there were Christmas lights on houses.  I just couldn't do it.  I couldn't put up Christmas lights this year.  Not that I had time, but it felt like a mockery to the families that didn't have their houses back.  I'm not saying it is, I'm saying it's how I felt.  Instead, we made Christmas goodies and I and my granddaughter knocked on doors and handed them out.  I just wanted to acknowledge they still suffered.  No, it's not Lybia and human trafficking, which should definitely be acknowledged.  But their suffering still matters.  Your suffering matters.  Whatever is happening in your world.  If your spouse is not well.  If your marriage is not well.  If your physical body is failing you.  Perhaps Hurricane Harvey has brought you to bankruptcy.  Your suffering matters.  I just want to acknowledge that.  I want to say that humans suffer.  That we should stop and listen to each other.  If not with our ears then with our hearts.  That we all must realize that we are humans, we are mortal and fallible.  That we should help each other when we can.  We need to show we care. Let's not let the business of life keep us from reaching out to each other.  Because humanity is our business.  We must come to understand that the degree of suffering is relative to the individual experiencing it.  Deciding the suffering isn't enough to warrant our concern is not part of plan A or B.  I pray that suffering has taught me that at least.  I know that no matter what someone is suffering I want to console them.  If God places them in my path, I want to notice and be His hand to that person every time I can be.  I want to listen when that person needs to talk.  I want to hug them when their soul bleeds.  I want to be Jesus to them because it's the least I can do.  Suffering is Plan B.  Suffering appears as a cruel taskmaster.  Taking away our hopes, lashing our flesh into submission.

I love Helen Keller's quote, "Although the world is full of suffering.  It is also full of overcoming it."  Yes, and she would know.