Life with Autism

  • I am..... - I am… I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of (child’s disability) - I looked at it...

Wednesday, September 18, 2013

The Man in the Mirror...

I caught Brandon looking in the mirror the other day.  We were in the bathroom after a toileting routine, and out of the corner of my eye I saw him for the briefest of moments look at himself in the mirror.  I wondered what he saw.  It looked like he was looking right in his own eyes.  Oh, how far he has come since the days at the school in the picture you see.  Then, he wouldn't look at anyone really, always looking down or away.  Never at anyone really.  Most certainly never in a mirror.

But the other day when he did, I wanted to have a magic bottle I could rub and a genie appear to grant me an answer to a question...   What did he see?   The man he saw, did he understand that it was him or did he just see a person he doesn't know? Does he possess the knowledge to know that the man in the mirror is indeed, him?  That who he is looking at is what he looks like?  Well, I guess I've used up my three questions for the genie...  I'm glad heaven is for an eternity, because that's how long I'll need to be asking God all the questions I want to ask.

I think it was something the Pastor said in church last Sunday that made me think of Brandon and dig out from the archives this picture of him not looking in a mirror!  It was something along the lines of how we can't wait until heaven, when our bodies will be perfect, etc.  I've been thinking about that a lot as it applies to my "Life with Autism" -- and Brandon.  Especially as I'm going through the Experiencing God Bible study and how it frequently asks us to share how we experience God.

I think one aspect of that answer for me, would be in how Brandon is in a way a mirror reflecting that image of what we will be in heaven -- perfect.  Who we will be in heaven -- perfect.  When I look in the mirror, I can list off a dozen things I see wrong with that reflection.  I'll spare you my list.  Suffice it to say, I don't first and foremost see someone who was fearfully and wonderfully made as God says in Psalm 139.  I see someone who may not have a disability, unless you count the inability to see what I should.  But Brandon -- if I were to imagine what he thought when he looked in the mirror and saw that man, that none of the things I think of when I see me -- would ever cross his mind.  I think he simply sees a person and perhaps just wonders who it is and why they're in his bathroom.  He doesn't possess the "intelligence" of worldly comparison or standards in knowing what a supermodel looks like versus the average woman.  What a six pack is and how he must work on his to get a hot girl to like him.  He simply has the genius of looking at himself and others through the eyes of God.   Seeing in them, what God sees in them. 

Brandon is, right here and now on earth, what we can't wait to be one day in heaven.  I'm not sure I possess the words to fully explain that.  Unstained by the world.  A person who is perfect in understanding the things it is that God wants us to be.  A person who sees things here as we will in heaven.  Labels of "ugly" "disabled" "stupid" "weird" "too big, too small" don't stick to him.  And he desires to put no labels on anyone around him either.  He has the purity of not knowing what a label is.  I think that's the greatest level of perfection we will be in heaven --- pure.  To Brandon, his body is perfect.  He doesn't know he has a disability.  He doesn't know he's different.  He doesn't know he's too skinny, has acne now and then, or that he has big ears.  He doesn't know he can't sing.  He doesn't care what the color is of the hand that helps him.  He is, right here and now, the purity and perfection that we look so forward to becoming in heaven but can't seem to find a way to here on earth.  I guess that's why I love to be around Brandon.  I love who I am when I am with him.  Not that I'm better, but because it doesn't matter to him that I'm not better.  He thinks I'm perfect just the way I am.  He doesn't know another standard.  It doesn't matter to him that I sing horribly.  That I'm not a supermodel.  That I'm not brilliantly gifted or super-smart.  I love who I am when I'm with Brandon because when I'm with him, I am simply crazy, mad, wonderful, --- me.

I wonder if the majority of what is made perfect in us in heaven, is healed in our body in heaven, is simply our mind -- in that finally in heaven we see ourselves as God has seen us all along. 

Perfectly created.

I guess that's what I'll never understand about churches who don't actively pursue the disability community and invite them to church or serve them in some way at church... No other community of people will ever see you as you will be in heaven, except for those like Brandon.  You can never be around any other population of people on earth who will allow you to see that reflection of heaven, than by loving and serving those like Brandon.

As much as I hate how I have been able to experience God in that way through Brandon, I love that I have been blessed with Experiencing God through Brandon in that way...

How maddening is that.........

Monday, September 2, 2013

Solace from his Storm...

There are things I want to know one day in heaven.  Like what Brandon was thinking one Saturday when he was jumping on the trampoline in a flash rainstorm we had.  He was laughing and jumping so very high and was so very wet!  He looked as if he could get right off the trampoline, go shower, shave, put on too much cologne,  then run out the front door to drive off to a football game with friends.  Then Sunday in a break between humming when his little cousin came over and so sweetly gave him his helium balloon and when he let go of it for the briefest of seconds watched it rise high into the sky.  I would like to know what he was thinking when he saw that.  How when he drops his other toy balls, they simply drop to the floor and he can pick it up.  Or most other balloons he plays with at birthday parties, how they don't fly away, yet this one did.  I want to know what he was thinking.

And during during dinner for him for over a week now.......  He has wanted to eat later, and so has been at the table by himself.  He scoots the chair just where he wants it.  Scoots the other chair away.  Any toy he has left on the table, he pushes out of his reach.   All that's left is his bowl, spoon, and drink.   Everything as it should be according to his world.  I watched him from the living room where I'm pooped and plopped down on the couch.  That's where I snapped this picture from.  It's been my view of him.  While those moments of him sitting there would be great opportunities for me to watch one of the many shows I have recorded that I never get to watch -- I found myself too mesmerized by the picture in the kitchen -- instead of the one on TV. 

I wonder upon wonders what was going through his mind as he sat there those nights all by himself.  It was dark outside, the shades closed, nothing for him to even look at outside the window.  I thought about getting up to go join him, but I didn't want to break the tranquility of his time.  He just seemed so...content.  It's rare for that.  Typically at dinner, he sits on the edge of that chair - ready to race off on a whim.  A few bites, then off to do something.  But these nights...these nights he sat there for twenty to thirty minutes at a time.  Eating a few bites then taking a drink, then picking up his spoon again and eating again...

Whatever it was he was thinking about, I hope it made him happy.  As I watched him I was a bit sad.  Seeing him sitting there all alone made me think of his future, who will be caring for him when I'm gone.  Will he be like that picture -- all alone?  I guess his thoughts were more cheerful than mine...  A time or two he would break out in a smile or giggle, then go back to eating.  I guess the angels he talks to in these moments like that, heard my thoughts and told him a funny story or something to make him laugh, so I would smile.

I'll never be able to convey with words what a beautiful picture that was to witness.  He was so sweet.  I guess where I can't find words to describe it, I can turn to worship:

Majesty, Majesty
Your grace has found me just as I am
Empty handed but alive in Your hands
Majesty, Majesty
Forever I am changed by Your love
In the presence of Your Majesty

Brandon wasn't alone eating -- he was in the presence of His Majesty...

So serene in those peaceful moments of solace from his storm.

Sunday, September 1, 2013

The Beauty and Blessings of Brandon and Brenna

A few weeks ago we had some precious friends over to our "Log Cabin" for a time of food, football, and fellowship.  One of the families has a daughter who has autism.  We have a son who has autism.  It was really sweet to watch how they interacted with each other.  The evening started with Miss Brenna bossing Brandon around.  He much older and bigger than her, she not intimidated by that at all.  She followed him around talking to him in a language only they know, no doubt giving him some early marital coaching in how he is to do what he is told to do.  I'm not sure what it was she was scolding him about or what she was trying to get him to do; but it was sure sweet to watch. Not to be outdone, Brandon had his turn to do the bossing as you see in the picture.  To Brandon, when you are on the trampoline you are to jump.  Not sit.  "Silly girl," he was probably thinking...... "Trampolines are for jumping, not sitting!"

So many of the things witnessed that day were so very sweet and moving.  Watching Brenna wander around my obviously messy yard picking up Brandon's straws and Chevy's toys and putting them in my garden, where to her I guess they belonged!  Brandon does the very same thing - so often driving in my car we will find things being launched at us. Things that obviously don't belong in the back seat with Brandon, but in our lap as we drive.

Autism is ugly, I will always feel that no matter what.  Autism is devastating.  It destroys with careless abandon.  It is crazy, mad, wonderful.  But what I will always be befuddled by and find so very beautiful in my "Life with Autism" -- is the blessing that each Brandon and each Brenna bring.

Someday, I hope to better understand that paragraph.  For now, I merely witness it and write about it.

In the meantime, I'll smile each time I see a cup precariously yet perfectly perched on the back of my couch, on the stairwell, or on a pillow where Brandon has placed it, as obviously cups belong everywhere but in the kitchen.  Todd and I will always look at each other and laugh each time we're driving anywhere with Brandon in the car and find our conversation interrupted by an unidentified flying straw or ball or swim fin from my swim bag in the back seat. 

After the hopefully many more times our newfound friends on this journey come over to the Log Cabin -- and days later when I go out to my garden to pull weeds and find a stash of Chevy's dog toys or Brandon's straws, -- I'll think of the sweet little girl who meticulously gathered those things and saw fit to place them there.

And on the days when the ugliness of autism becomes too great a burden to bear, and I find nothing beautiful or funny about the destruction and sleep deprivation it brings, -- I'll smile and think of the beauty and blessings of Brandon and Brenna and how they do make this crazy, mad journey just a bit more wonderful...