The Pain of Autism

Sometimes autism just knocks the breath right out of me.

That's what this picture did.  After the past week of rare video's of my son laughing, smiling, and winking at me in the car -- Click here to view the video -- and even rarer still pictures -- to then have been shocked back to reality by this picture is like being sucker punched in the gut.  I don't know why this picture shocked me, it's not like our entire "Life with Autism" hasn't been a roller coaster where the highest of highs are dramatically followed up with the lowest of lows. Often scaring you to death or making you feel like you want to vomit up your lunch!  I've been blessed by "Life with Autism", enriched by it, yes.  But thrilled by it as a roller coaster ride, never.

But I chose to share this picture because it so symbolizes the depth of autism.  How just when you think things are going great -- leaps forward, or as in our case, itty bitty inchworm steps forward -- it digs its ugly roots in deeper to show you just how deep autism's roots are.  Or in this case, it digs their fingers deeper into the skin, scratching, tearing, scarring.  We keep his finger nails short.  So imagine just how hard he was scratching himself to produce what you see.

He was in the bath tub, his favorite time.  Water, jets, water.....  He was giggling as he does.  I was on the bed where I can see the tub and the back of him and was listening to him have a good time.  Doing his squeals of laughter as he does.  He was doing what he was doing if you clicked that link above and watched the video.  It was a peaceful time, I was getting a few moments of down time while Brandon was enjoying his "tub time."  Then after a few moments I went in to check on him and wash hair, etc --- and was absolutely horrified to see this view in the picture above.  I have to admit that some not so nice words came out from the sheer shock and disbelief at the sight before me. I'm all wondering if I passed out and a mountain lion somehow came into our house and tore into his chest!  But I didn't pass out.  A mountain lion didn't do that.  Brandon did.  When Brandon laughs, he often curls his hands up into his chest and does a little "scratchy" thing with his fingers.  He pinches up his shirt, it's just what he does when he laughs.  But in the absence of a shirt -- this is what the result was.  Just think for a moment how hard you would have to be scratching your own skin to do what you see in the picture.  I tried to do that on my arm and couldn't even get that result, at least before pain stopped me.  That is how deep autism reaches into a child.  It steals their childhood, their imagination, their sense of danger, and their sense of pain.  All I heard from the next room was laughter.  Lots and lots of laughter.  No sense or indication that he was hurting himself.  Not even in peaceful fun can autism not be supervised.  That's how deep autism is.  Not even in times of laughter can there be down times for the parent.  That's how deep autism is.  It took half a tube of neosporin to even cover all those deep scratches.  What typical child in simple laughter would do that to themselves?  And if that picture is the result of what had to be painful but was instead laughter for my son -- can you then imagine the depth of pain he must be feeling when he literally chews his hand in pain from the flare-ups of his bowel disease?  Can you then imagine the depth of frustration or over-stimulation it must take for him to scream out at times and further bite his own hand to the point of blood?

I share so much of the joys of autism, our few and far between victories, our heartache and heartbreak at set backs - and on days like today, the very ugly side of autism.  The confusing side of autism.  The side of autism that sucker-punches you and leaves you reeling.  The side of autism you will never see as a sense of urgency in any autism awareness campaign or government led anything about autism.  No, for those things, all you would see is the photo-shop picture-perfect boy laughing in the tub as if autism were nothing more than an alternate lifestyle.  Not this one.  It's not cute or pretty.  We must keep these pictures hidden.  People don't want to see real autism, it's much easier to ignore the pretty one of kids who will no doubt grow up fine and able to care for themselves.

That's why I'm sharing this picture of "Life with Autism -- in Pictures" -- and even this doesn't even come close to scratching the surface of just how deep the pain of autism is.

Pun intended.

This little light of mine...

Psalm 4:6
Let the light of your face shine upon us, O Lord.

So often I think of what purpose there is in my son being burdened by autism. I believe in Faith, live by Faith.  In that, I understand that there is purpose in all things.  Good, Bad, and Ugly.  Life with Autism covers all three at times.  Sometimes, all at once.  I've learned to live our Life with Autism moment by moment.  I try to forget those moments of the past that brought me to autism.  Vaccinations mainly.  I can't forget though, so I simply try not to stare too long.  As painful as it is to even fathom, I plan for the future.  A future for my son once I'm no longer here.  I look ahead as often as I must, but the glare is simply too much.  I find myself turning away in pain.

But the present. 

That is where I try to live.  One moment at a time in the present.  Savoring the successes of that moment, and knowing that any sorrows in that moment will quickly pass away.  Remembering that it's always darkest right before the dawn.  When the light of day brings new grace, new mercy, new HOPEISM.  We've been experiencing much darkness for the past four years now with relentless seizures and a health decline.  But slowly, slowly we have been approaching dawn and this week, experiencing such bursts of miraculous light in the pictures captured of our son smiling, laughing, happy.

Such light!

It reminds me of Ephesians 3:20-21 which says, "Now  to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ....."  Brandon's purpose in our lives is to show us immeasurably more of God's light than we would have ever experienced had it not been for his autism.  As I'm learning in Experiencing God -- when asking for something in prayer, as in the healing I so often ask for, what if God has immeasurably more than that?  Sure, God can heal Brandon.  He's made the blind see, the lame walk, and he's even resurrected a dead man from his grave.  Healing Brandon would be nothing to him, so to speak.  But what if our period of silence in the answer of that prayer is God wanting us to see more of Him.  More of His light, His inspiration, His HOPEISM shining on Brandon for all who are touched by him to see.

2 Samuel 22:29
"....the Lord turns my darkness into light."

Psalm 43:3
"Send forth your light and your truth, let them guide me; let them bring me to your holy mountain, to the place where you dwell."

Psalm 119:105
"Your word is a lamp to my feet and a light for my path."

Isaiah 42:16
"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth."

Oh my Brandon -- I pray so very hard for healing for you.  Yet I know you have something far greater than that... 

God's Glory, God's light shining upon you.

2 Corinthians 4:6
For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of God's glory displayed in the face of Christ.

The world outside the window...

Weekends...

For typical families there are endless possibilities, sports, parks, movies, etc.   But for families of those who have autism, the kind that isn't rich and famous, -- what is there outside their home?  What endless possibilities are out there for them to safely participate in?  What recreation for them while at the same time respite for the parents?

Today, Brandon was looking out the window, wanting to go somewhere.  He can't ride a bike down his street.  He has no friends to go hang out with.  It's challenging to go to most parks because they are so open.  I would need three of me to be able to hand off the baton to in a relay of endless chasing and following to keep him in my sight and within arms reach should he bolt.  Yet he wants to go, do, be.  Though he is far from "typical" -- his energy level far surpasses typical.  He needs a place to go where it's safe for him to go.  A fenced in playground where I can sit at the gate and let him just roam freely.  A respite program at a gym or recreation center where they can just run and play while the parents can go do errands, go out to dinner.

It breaks my heart to see my son so want to be out and about - yet for him there are few to no opportunities for that.  There is such a great need.  So very many just like Brandon who are looking out that window on a weekend wondering when they can do what they see others do.  A place to go that is not their house, where perhaps there are some fresh hands and feet to chase them, tickle them, talk to them. A High School allowing parents to take their children to the track on a weekend.  Those are usually always fenced in.  Yet locked.  A church that's empty on a Saturday is a great place for recreation - especially those that also have fenced in playgrounds.  Too much liability I guess.  Parks that see the need for a totally fenced in area where tired mothers can sit by the exit and energetic young adults run around.  Too expensive I'm sure.

I long for when our communities will unlock opportunities for Brandon and all his friends. For when they will simply see them as someone to love, not a liability.  For when everyone will see them as an investment, not an expense.

In the meantime, we do what we can. Today a drive with Dad to get the car washed...  Other times we've gone to Galveston for day trips, often, we do errands.  But what teenager likes to go on errands with their parents?  Not many.  I'm sure Brandon feels the same way.  It's always us though.  We live autism 24/7.  It would be nice for Brandon to have a place to go outside of his home.  It would be nice for us to have someone else provide some recreation for him while we do our errands, have but a moment to ourselves.

Parents of children, youth, and adults who have autism are tired.  We are getting older and slower and worn down.  We need help.  Recreation programs for our children is respite for us.  Our children have typical energy levels, yet no recreation programs suited for them.

So we wait. 

Like Brandon at the window. 

For our communities and churches to come together in providing opportunities for those in the autism and disability community to get to experience the world outside their windows.

Of castles, dungeons, and a Queen Mommy who needs to live forever...

I've wanted to share about this picture for a while now...  It's not the best picture I know, but it's what I can get from my car as I drive up to the center to pick up Brandon from school.  He is often standing at the window looking out -- watching and waiting.  He knows it's time to go home when he stands in the kitchen where that window is and helps to gather his lunch things to put in his lunchbox to come home.  He may not know what time it is, but he knows it's time to go home when he sees the cars line up.  

My son has no imagination that I know of.  That was the first childhood rite of passage that autism took from him.  He's never played Cowboys & Indians.  He's never pretended to be Superman.  So during the times he's at the window, I sometimes imagine for him.  I imagine that he knows me as Queen Mommy and I'm coming to rescue him, Prince Brandon, from behind the bars of the evil dungeon he's trapped in.  All of the stories I told my boys at bedtime were about Queen Mommy and King Daddy who lived in a castle in a faraway land with Prince Matthew and Prince Brandon and the Royal dog Copper.  King Daddy was always off slaying dragons or something...it was my story and so Queen Mommy who ruled the castle was the main character!  Back to reality --- where he is, is far from being an evil dungeon...  More like a Spectrum of Hopeism.  I just like to imagine that he truly knows who I am and looks forward to me picking him up, and not just that when the burgundy Suburban gets there, it has straws and his favorite football in it.  When I drop him off in the morning and as I drive away, all that I see is how he stares longingly at my tires, not me!  Oh, how crazy, mad, not-always-so-wonderful-life-with-autism is that.....  How one boy cried when I dropped him off at school, hugging me and asking if he could stay home with me; while the other only sad because my tires are going away...

This picture evokes so many emotions.  Thoughts that both bless me mightily and scare me more than the most haunted of houses at Halloween.  I am so blessed that we found such a therapy center for Brandon, filled with people who love what they do and who do it well.  Full of people I trust.  Thankful for the most delicate, finest of fine lines of provision that allow him to be there.  I love having a place to take him each morning he can be there where he will be taught the things he must know, and I love even more picking him up in the afternoon to bring him home where he can be free to just be him.  I love seeing his face in that window when I drive up.  It brings such a smile to my face to see him standing there waiting for his straw and favorite football... He may not know a lot of things, but he knows that when I get there, he gets music, his straw, his football, and then gets to drive home where he can take his shoes off and go in the back yard and jump on the trampoline with Chevy.  When King Daddy comes home he gets to be chased and tickled and wrestled.  When it's bedtime he knows he will get to lay in bed and watch his Michael W. Smith worship DVD while I continue our stories about Queen Mommy, King Daddy the Dragon slayer, Prince Matthew and Prince Brandon and the Royal dog Chevy.  But the one emotion I hate feeling when I drive up and see him looking out that window, is the fear of what will happen to him one day when I'm no longer here to pick him up...  Who will he be watching for?  Who will have his straw?  His ball?  Who will know what music he likes?  What kind of home will he go to?  Will it be to him a friendly castle or a scary dungeon?  Will they let him run barefoot?  Jump on a trampoline?  Will he have a dog like Chevy to jump with him?  Who will play his DVD's at night and lay beside him and tell him stories?  Who will be his dragon slayer to make sure he never ever, ever, ever, ever, needs to be rescued from being drugged up, abused, neglected, -- trapped behind the bars of an evil dungeon?

Oh, how I wish Brandon was the only one of us with the imagination...But since I'm the one who can imagine, each day that I see him standing there in the window I'll pretend that one day when I am gone there will be a castle in his community where he can live and jump freely and be happily ever after... 

Ahhhhh, HOPEISM ---

The thing my fairy tale depends on!

Of Brandon, Blurriness, and the Blessing of HOPEISM.

No, you don't need to adjust your glasses or your computer screen.  Brandon is blurry.  That is his "Life with Autism" -- always in constant motion.  A blur.  The only time he is still is when sleeping or when recovering from a seizure.  All other times, if you want to capture a rare picture, you best have your camera on, ready, and set to sports action.

When I was looking at this picture as photos from my iPhone were downloading to my computer, I almost deleted it along with the many, many, many other pictures that captured autism more than Brandon.  It's always only one or two out of so very many that are "keepers."   This one almost didn't make the cut, it was blurry.  I was a split second too slow in capturing the smile he had while looking at me.  By the time I could hit the button on my iPhone --- in the words of the Jase Robertson on Duck Dynasty, "He Gone!"   And this picture almost deleted.

But something about it made me keep it.  The way it describes our "Life with Autism" so perfectly, I guess.  A blur.  Some days seem like just that....a blur of craziness.  Of seizures.  Of autism.  Of constant motion.  Of constant humming.  A blur of never-ending advocacy.  Never-ending research.  Never-ending worry about what the future will hold for him.

Then I also thought about how it describes my HOPEISM.  For me to survive and dare to thrive in "Life with Autism" - my Hopeism must be like that picture.  In constant motion.  In that picture I can see the faint outline of where Brandon was the instant before he started moving forward.  I want my Hopeism to be like that.  A series of outlines of where my Hopeism was, before it moved forward. Always keeping pace with the many challenges we must face. I don't want a perfectly poised portrait of Hopeism that I can frame and be content in staring at.  I want it to be blurry because not even the most powerful shutter speed could keep up as it moves far from what I can even see through the lens.

Oh my Brandon, my blurry, blurry Brandon--- 

How you do help me see the Blessings of HOPEISM ever so clearly...

Experiencing God through Pictures...

 Much like Brandon was staring at me in the picture above that I took yesterday, I've been staring at a blank page, blank computer screen, and blank air all week in searching for where God is working so that I could join him there.  That's what the Bible study I'm doing is all about....  Experiencing God.  Knowing and Doing the will of God.  Seeing where he is working and joining him there in that work.

That's been tough to blend in with a life of autism advocacy.  I see Pharma at work, I see a corrupt medical system at work, I see woefully inadequate service agencies at work. I see insurance coverage that doesn't work for us.  I see few opportunities for recreation, respite, and meaningful work for our kids - at work.  I see an uncertain future for our adults with autism at work.  In fact, for there to be appropriate places for them to live and be cared for once I'm dead -- at work -- someone should have been at work on that over a decade ago.

So you see my dilemma. 

But like Brandon, I just keep staring.  Searching.

These pictures were taken in a neurology specialist's office.  I left my house at 1:30pm and didn't return until 7:30pm.  I remember after the first hour waiting in that office - out of the blue asking God, "So....where are you at work as I'm in this wretched place yet again?  Spending a wretched amount of time to get nothing wretchedly accomplished yet wretchedly again?  How can I experience you here?"

Probably nothing with that attitude...

I'm sure I single-handedly keep God laughing and shaking his head at my wretchedness.

But in all honesty, I'm wretchedly tired of it all.  The hurry up and wait for nothing medical system that is "Life with Autism."  Hurry up and get there early so you can sit there and wait for no help...  As I was trying to give myself an attitude adjustment, I looked down and saw Brandon with the sweetest expression.  He's the one who has it hard, yet I was the one complaining.  He was sitting there, still, something that is not in him to do, and I was the one pacing like a caged animal.  

 

Through each weeks study of Experiencing God, it talks about  how we are to be looking to see where God is at work and joining him there.  So often I get so very bummed out because I see other places where he is at work, where I would like to join him, but I'm rarely able to.  Plans thwarted by seizures.  The 24/7 demands of autism.   I desire so greatly to serve God, yet so often feel I can't.  Which often leaves me feeling like I'm not experiencing anything at all.  I so want to be able to go to class on a Sunday night and share this big grand story of where I saw God at work and joined him and the hugest of miracles that occurred in doing that.  I desire that grand story so much sometimes that I often overlook the smaller yet just as grand stories of where he has been at work all along, and where I was joining him but didn't realize it. 

Like in being a mother, a guardian, an advocate to this sweet boy in a young man's body.  In how in the midst of chaos to him -- being in those medical centers for hours over the course of two days -- I was able to experience God by capturing these miracles of pictures.  Miracles to us at least.  Others with typical children can get many such pictures.  But not me.  When I share a picture of Brandon, it's not that I searched through all my good ones to find the best one.  It's that by grace of God I was able to get just one that shows Brandon more than his autism. And like here, when I have all these, oh my goodness.  I can't describe this feeling.

Like most everything, I'm a slow learner.  I wasn't seeing God in anything in that doctors office until I decided to simply enjoy Brandon.  In between bouts of where he was getting tired of it all, he was ever so sweet and I wasn't going to miss these rare opportunities to capture him in picture.  Even while all the doctors were in there asking me question upon question, I kept clicking the camera hoping one picture would capture a grand miracle I so desired to be able to share about.

The past two days have had the added benefit of being personally empowering.  Typically at the medical center and around specialists, I feel at their mercy.  Held hostage by their rules, their ways, their expertise.  But no more.  I no longer felt that way.  At one point the fancy specialist asked if I would turn off Brandon's music.  He won't wear headphones so I have my iPhone playing softly, yet where everyone can hear it.  I simply replied that Brandon is calmer with his music and that this appointment is about helping him, not appeasing her.  She would have to adjust for once.  Not Brandon. 

As we waited in the valet parking area for them to bring our ride home, for a moment I was again wretchedly distracted by a woman about my age who was getting off work.  She walked out the door, took off her name badge and perfectly ironed jacket that matched her perfectly ironed (non-Camo I might add) pants and started walking in her perfectly polished high-heeled shoes down the street I guess to where her car was.  It was a beautiful evening, the breeze was blowing through the trees and for an instant I was wretchedly jealous of her most likely non-autism typical life.  She worked her eight or so hours and now was free to enjoy the evening.  Maybe stop somewhere for coffee with friends, maybe go jogging as I saw so many people do on the way home.  She could go shopping, to the market, go out to eat.  Her choices were relatively endless.  My choices always centered around the limitation of life with autism.  I put in my eight hours before I even left for the medical center.  Nearly put in another eight while there.  Then when my car came, I would have to put in another eight or so before Brandon goes to sleep.

She was relatively free to see where God was at work around her and join him there.  The food pantry, church volunteer project, whatever.  But even in that, God still had something for me to experience, even if it had nothing to do with joining in a work. On the ride home in rush-hour traffic, I had more opportunities to witness, and safely capture, Brandon's sweetness. 

His excitement at finally getting to go home...

His discovery of how the wind feels against his face while looking out the window.

And finally....

Home.Sweet.Home.

We were both very ready to experience that!

Through spending these past few days at the medical center with my son, I not only had the miracle of experiencing a side of him I rarely get to see --- but I had the added blessing of realizing how I have been Experiencing God all along, through Brandon.  In the way the author of Experiencing God had anticipated?  Probably not.  But if I can come away from the medical center and think I've Experienced God through pictures, then perhaps I've indeed joined in a small piece of a work he was doing. 

Oh how I wish others would look really hard to see how God is working in the lives of those who have autism and want to join in and experience those blessings and miracles too....

The harvest is unfortunately plenty.

The workers?

All too few.

An Image of Innocence...

I captured this photo tonight while Brandon was taking a brief break from jumping on the trampoline.  He was laying down along the net on the inside of the trampoline -- I was standing on the outside. 

I can't stop looking at this picture.  An image of innocence.  He can look that peaceful because he has the purity of innocence.  He is not stained by the ugliness of others.  Of this world.  Of his autism.  Even as severely as he is affected by autism, he doesn't often show it.  When by all rights, he should.  He should be angry.  Un-trusting.  Fearful.  But he's not.  He is an image of innocence.  When he lays down like he is on the trampoline, Chevy, his Labrador, will come over and sniff him and lick him to make sure he's ok.  Brandon has no fear that it could be a grizzly bear coming to attack him.  Those thoughts don't seem to ever enter his mind or worry him.  He does nothing in defense of the sniffing and licking he's about to endure.  When I see Chevy come bounding through the door ready to launch on my bed, I assume the fetal position to protect all vital organs.  I know all too well that a paw landing full force in my spleen doesn't feel good. I know what pain and fear is and I anticipate and avoid them at all costs. 

But not Brandon.  His innocence doesn't allow for those thoughts that I can tell.  As an avid student of Brandon, I love to just watch him and study him and wonder what he's thinking.  Most often I wonder what that would be like.  To be the typical adult I am and to be able to live my life that innocently, --- on a trampoline with no net so to speak.  Not hiding in it, or using it to keep others outside of it.  As mesmerized as I am by this picture, I'm even more mesmerized by how he trusts so completely.  Lives so fearlessly.  When he gets on the top bunk and then wants to come down but can't quite figure it out, I'll hold my arms out and onto his.  He holds on and jumps off.  Not ever considering that I could drop him.  When I care for him, help dress him, hold him through meltdowns, he has no understanding or fear that I or anyone else, would hurt him or allow him to be hurt.  He has the innocence of trusting completely because all he has known in our home, has been love and protection; which makes it all the harder to bear those times in medical centers when we've had to hold him down for blood draws, EEG's (which we will never again subject him to) and other procedures essential to his care.  I wonder what he must think of those times.

I wonder what it would be like to be as innocent as he is.  To trust others completely as he does. 

I wonder who he's looking at way high in the sky in this picture.  And what he's thinking.

I wonder if that net that separates us will ever be removed and the thoughts inside his head released so that I no longer have to stand on the outside and wonder...