What Does Our Daughter's Autism Look Like?

She's at a movie theater, she is sitting next to me, legs folded "cris-cross-applesauce." She keeps her eyes peeled on the screen, pausing every few seconds to scrunch her tiny nose.  "What does despicable mean?"

"It means really bad, please whisper," I say "We are in a movie theater.  It is a quiet place."  She stares intently still, not removing her eyes from the screen.  She rhythmically pulls on the bracelet that surrounds her slender wrist.

"What does villain mean?"

"It means a bad person, remember," I say "We are in a quiet place." I shift in my seat.

She rocks gently back and forth in hers.



We are at the library, a gentleman is there to showcase snakes, a special viewing for children.  Around us are parents and small children of various ages.  Before us is the presenter and aquariums covered with sheets.  My daughter sits in front of me, surrounded by her siblings.  "Does anyone have any questions before I begin?" Several hands rise.

"When are you going to take the sheet off?" She yells.

"You can't shout out," I gently say "You must raise your hand."

"Are there snakes in there?" She hollers over me and the crowd.

I put my finger to my lip.  She looks through everyone as if she is the only one in the room.

Her brother's foot gently brushes the back of her leg. "Stop touching me!" She yells.  "You know I don't like it when you touch me!"

I can feel the stares sinking into the back of me.



We are at the ball field, an earned promise to our children, a game of baseball and a picnic on the field.  Her siblings are laughing and running despite the heat and sweat that is overcoming them; gloved hands, tightly gripped bats, soaring balls.  There are smiles everywhere.

Inside the dugout she sits, alone, book in hand.  Completely content to not participate.  She does not feel left out.  She is partially in her own world, and partially taking in the world around her, trying to grasp how it operates and what feels right to her.  She is learning what parts she wants to own and what parts she wants to discard.  She is figuring out how to be graceful in a setting  that was designed for those less unique than she was created.

It is not easy, it is not comfortable, but she is doing it day by day.  This, is our daughter's autism.

How this Special Needs Momma finds her Peace

They approach her bed, something is fiercely wrong.  Her alarms sound quicker and louder, sounds I have never heard before; noises I cannot connect with the reality that is vastly falling around me. 

I watch her lying there, nearly lifeless, although she must be living, the alarms tell me at least this much is true, so why isn’t she moving? Why isn’t she responding to their shaking, their vigorous rubbing, their claps, their yells.

I stand there completely still, as if I am not there at all.  I now know the truth and it isn’t safe with me.  I have no idea what to do.  I feel useless, afraid.  I close my eyes and try to find my peace.

It’s hard to imagine not having that one place your mind can always turn to; that one security, a place no one can harm you even in plain sight.  The world and all it’s unthinkables cannot touch you there.  The flesh wounds that each day inflicts are healed here.  In this place I am safe.  In this place I find my peace.

It’s 3 A.M. an ominous light peers through the window as I lie awake in a hospital bed.  It outlines everything unfamiliar that surrounds me, ending it’s design at the jarred door.  The hall lights are dimmed, like a drug store that has been closed for the night.  My family is tucked away elsewhere, my kids fast asleep.  I am alone.

 

I am here to rest and recover, but resting I cannot do.  Nothing here is familiar, or mine.  Even the pain inside my body feels foreign.  The blankets that are meant to keep me warm are brittle from years of being bleached and reused.

The IV pumps, forcefully, interrupting my thoughts.  This is not my place.  I close my eyes and try to find my peace.

As I finish my nightly routine making sure all of my children are tucked gently into bed I too find my way to my resting spot.  As I climb in my worries begin falling steadily to the floor.  I roll on my back, the softness of my mattress consumes me.  I exhale deeply, and inhale again.  In this place I am safe.  I close my eyes and try to find my peace. 

I take a look at my daughter.  She has more medical interventions than I have seen most people manage outside the walls of a hospital.  Some days I wonder just how we got here, and could we ever go back? It hurts to think about the choices we made and how different things may have been if we had just done “a” instead of “b” or the reverse.  Thinking like this does not help, it only leads to more pain, a heart that bleeds tears that sting the flesh.  I close my eyes and try to breathe.  My chest feels heavy.  I try again to find my peace.

Night:

You had a rough day.  You cannot go back in time.  Searching for reasons only brings more questions.  Searching for questions, never seems to bring answers.  You have made your choices.  The road you chose to take was a one way road.  It is too far gone now to turn back, just breathe.

Morning:

If you got through yesterday you can get through today.  Put one foot in front of the other.  You can only move forward.  Moving forward can never get you behind.  Go, move, and find your peace.

My day begins and ends with the only place I need to be, immersed in my faith.  It is the pacifying warmth that protects me from a world that is a little too flawed.  In my faith, This is where I move through the pain, despite the pain.  This is where I am safe, this is where I have peace.

When the Doctor Told Us We Would Outlive Our Daughter

There are few times in life that I can honestly say I nearly lost all faith; faith in everything, time, logic, even God.  Having no faith is like having no air in your lungs, no blood in your body, no place to go, no reason for anything, simply existing without purpose.  That is what it was like for me the moment a doctor told me in all reality despite some catastrophic accident, or miracle, we would outlive our daughter.

As the air began to refill the room a bit, I glanced over at our then five year old daughter.  She was sleeping on the examination table.  We had driven nearly a half days drive to get to see her specialist, and despite sleeping in the hotel for a full nights rest she was still simply exhausted.  She had ostomy collection bags hanging from different connections in her stomach collecting the drainage that her stomach and intestines could no longer process.  She had IV supplements pumping into her permanently tunneled central line to give her the nutrition her digestive tract could no longer maintain.  She was frail, her stomach was protruded, she was pale, and despite the life threatening sepsis she had just made it through, the chronic liver inflammation she was battling, the bone marrow suppression, the seizures, and difficult to treat infections we knew were ravishing her body and making her weak, it was truly the first time I saw her as ill as the doctor had just described her.  I wanted to be sick.

“How can you be sure?”

“When you have been doing this as long as I have, you just know.  No one's body is meant to carry on like this for the long haul.” she said as empathetically as she possibly could. 

I choked a little, my mouth without any saliva at all. “How long?”

“It’s hard to say.  If she continues down the path she is on now, as rapidly as she is, maybe one to two years at best.”  She looked at me for a moment longer, glanced again at my sweet sleeping girl, and then looked away.

“No, no,” I thought to myself, “There must be some mistake.  It just cannot be my little girl we are talking about.”  The entire conversation felt surreal.  Our doctor’s at home constantly tried to sugar coat everything.  They were always giving us the old “just give her some time,” speech.  I was so jumbled up I didn’t know what to believe.  Then it struck me.  It hit me so hard I nearly crumbled out of my seat; how quickly she had gone from a nearly asymptomatic little girl to a child who needed support for nearly every organ in the short matter of only 2 years.  How could this be happening?

I left that day not with a plan to treat or fix my child, but a paper full of suggestions and accommodations on how to best make her comfortable.  The shift in care left me feeling defeated.  She slept the whole way back to the hotel, while I cried.  The world isn’t supposed to work that way, you aren’t supposed to outlive your children.  You give birth, you raise them, you have grand kids, you help raise them, you get old, your kids help care for you, and sadly one day they bury you, and mourn for you, but that is the way this world is supposed to work.  It is the only fair and just way this world is supposed to work.  You aren’t supposed to bury your babies. 

It has been three years since that fateful appointment, and it took time, but I have regained my faith in; time, logic, and even God, not just because my daughter has lived, but because I need my faith to keep me sailing through this life we are leading.  I have watched too many friends of mine, whose children too have mitochondrial disease, bury their babies outside the proper order of time.  I have fought with the unfairness and illogic nature that comes with that tragedy.  It gouges out your heart and makes your soul bleed in a way I can never fully explain.  

 I can’t help at times to wonder when my little girl will no longer have the strength to fight, but I do my damndest not to think that way, not to live that way, because the only way to keep the life in her years is to allow her to live them, and that is what we intend to do.  Every morning when we wake, we give her life again, to the fullest, until the end. 

Our Little Miracle

We loved you long before we ever knew you.  From those early wishes and hopes for what your untold future would be, to the first beats of your heart and kicks of your feet.  We made plans for you, aspiring deeply to paint a picture hand-over-hand of the future you would have, one as beautiful as the love we felt for you.

We read to you every night as you nestled deep inside my womb, uncertain if you could even hear us, but believing that you could.  As we lifted the words off the page we let them be your story, written by another, but told by our hearts.  We allowed ourselves to think you owned them as if they were meant for you.

We engraved those words upon your baby blanket, so that when you made your entrance into this world we could wrap you in their warmth and familiarity.   We folded you tightly like a package, the visible corner underneath your Heaven-made face read;

           "Gaze at the stars,

             and watch the moon rise.

            Each day there are miracles,

            in front of our eyes.

            Dance to the music,

            and sing like the birds.

            Let stories and books,

            bring the magic of words.

            Enjoy friendship and laughter,

           your whole life through,

            and the love that we feel,

            as we welcome you.

        (My Little Miracle J. Beck and J, Croydon)

          We love you so much!
          Love,
          Mommy and Daddy"

We watched you grow and it was ever clear you marched to the beat of your own drummer.  You did things your own way, in your own time, and within your own expectations.  There was never a dull moment within your presence, lighting up each room you entered like the Fourth of July, all eyes on you, every one else taking a back seat.  There were days we feared you would fly so high you would never come back down.

We worried when they said that the you that was so special and yet so hard to "read" had autism. What would that mean for all the things we wished for you? Would all of our dreams for you now be just out of reach enough to make us ache?

We watch you grow now with this invisible label you wear upon your sleeve, always shedding your layers to reveal what is underneath, the raw, take-all-or-take-nothing you.  You are this amazing force inside a pint sized body, a constant tangle of knots we are trying to undo.  You refuse to be unwound.
 
We have overflowed with joy as you have checked off each of the dreams we had for you one by one without even knowing it.  You just love looking at the stars.  You take in everything like it is art, the sky to you is like a giant canvas, the stars small specks of paint.  Music moves you, your body constantly moving to a silent symphony that plays only for you.  You have loved books since you could hold one.  The first thing we learned you loved to do was count words and letters.  When you were four years old you told me there were twelve-thousand and fifty-two Z's in Daddy's chapter book.  You were so proud of yourself.  Words are definitely your magic, and boy do you love to laugh.  It echoes through our home and down the street.  It is impossible not to laugh with you when you are laughing.

We know you will always be uniquely you and that is just fine.  You have paved the way, so just continue to lead us behind you sweet love.  We didn't even know what we wanted until we got it.  It is funny how life works out that way.  Today I realized my heart couldn't be any more full when you approached me to give me a card you had made.  You told me that you had been reading your baby blanket every day and that you wanted to write me back a letter to tell me how you felt.  Before I even read it I felt my emotions take away my words, no matter what your feelings were, just knowing you were willing and able to share them with me was more than I could ask for.  What it said was far more than anything I could have expected:

"Dear Mommy,

I am really glad that you are my Mommy.

I love you so so much.

No matter where you are I will always love you.

Love,

Me"

Most importantly of all the things we wished for you, we know you feel loved. You my love are our "little miracle."

I Will See You When the Moon Goes Down and the Sun Comes Up

Every night since our son found the ability to speak to us he refused to let us leave his room with “goodnight, see you tomorrow.” He would swiftly shout back in his small sweet voice “no goodnight, not tomorrow.” Though to most it would seem like a defiant move to reject the idea of going to sleep that was not his reason, not one bit, not at all.

He simply needed the reassurance that closing his eyes meant nothing in his world would change.

I used to need that reassurance as well. For years our world was rocky, only barely remaining on it’s axis.  Our daughter and son’s health were in a near constant battle to stay stable keeping us in a revolving door of inpatient stays at the hospital. As the children continued to decline, so did my ability to stay faithful that they would stay with us long enough to see a cure for mitochondrial disease. Things have become a little calmer around here, but I would be lying if I said there were not days where that deep rooted fear did not climb to the surface of my mind. 

There were days he would wake up and find me gone. I hated that for him. So many; unexpected admissions with his sister, late night ambulance rides, middle of the night kisses goodbye, with no way to explain to a small-nonverbal-child that Mommy was coming back as soon as she could, wishing with all her heart that she could somehow be in two places at once. It was traumatizing for us both, the near constant separation that went on for well over a year. We all tried our best during those arduous times, but sometimes our best just wasn't good enough no matter how hard we tried. Only God knows how we came through, suffering only minimal scarring, on the other side. 

Not a day goes by where I do not count my blessings for that fact.

***********

I crawled into his bed, he lay on his side fidgeting with his flashlight. Placing his small hand in front of the light watching to see where it would fall, then glaring with fascination as it illuminated his hand when he interrupted the beam. I straightened out his covers and placed my head on his pillow. He rolled over turning off his flashlight, looking through me with his glassy grey eyes. 

“Are you sleepy yet?” I asked running my hands through his moppy-sand-colored curls. 

He smirked slightly curving only one side of his mouth, shrinking his eyes so that only his pupils were showing.  His thick eyelashes like blinds covering the small opening of his eye. “No, I not sleepy.”

“I think you are.” I stroked his baby soft cheek, his skin like satin.

He rolled over facing his top bunk, clicking his flashlight on and off, the light creating a perfect circle on the dull wood surface above. “Mommy, where does the moon go when the sun comes up?”

I laid still for a moment, unsure of what to think.  I was surprised by his sudden ability to formulate a question, the advanced thought process it must have taken, things he had struggled with since he had learned to speak. How long had he been thinking of this?

“Mommy?” He rolled back over pressing his small button nose to mine, so close I could smell his sweet baby breath.

“Well,” I paused for a moment to think “it is still there I guess, you just can’t really see it when the sun comes up.”

He sat up quickly, pulling the covers off of both of us, grappling for his flashlight, again shining it on the wall and then covering it with his hand, staring at it intently. “When the sun comes up the moon goes away? When the moon comes back the sun goes away?”

“Yes, but they don't really go away buddy. They are always there even when you can't see them.  Sometimes, when the sun is up, and you look really hard, you can still see the moon.” I sat up next to him gently taking the flashlight. I placed my hand on top of his letting the light shine through both of our fingers. He looked up and smiled, seeming to understand.

I finished tucking him in and started for his door. “Goodnight, sweet guy, Mommy will see you tomorrow.”

“No, no tomorrow, no goodnight.” He shot up and pouted.

“Mommy already tucked you in little man, it is time for me to go.” I turned around to leave.

“Say, I will see you when the moon goes down and the sun comes up, say that.” He was near tears, his chest rising and falling quickly, his face turning blotchy and red.

It was then that it hit me, he needed to know that just like the moon I wouldn't really go away, and just like the sun I would always come back. I walked back in and sat on the edge of his bed, placing my hand on his back.  He laid down, his mouth still in a downward curl.  His eyes turned towards his pillow. “I will see you when the moon goes down and the sun comes up.” 

He closed his eyes, smiling, and gently drifted off to sleep.

Embracing our Path to Homeschooling

Our daughter started off her kindergarten year just like every other eager five year old.  She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday.  Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.

We tried our best to make it work.  Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible.  There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener.  Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her.   She simply became too sick to attend school.

At that point it was clear the only choice for her was to be homeschooled, so that is the choice we had to make.

The benefits have been clear, but it has been a very difficult road to acceptance.  Homeschooling our daughter was not something that had ever crossed our radar.  Not only had my husband and I both gone through the public school system to achieve our educations, my husband also spent years obtaining a postgraduate degree so that he could teach within the public schools.  It was very far outside the boundaries of our comfort zone, and something that we just had never chosen to put much thought into.  We had no problem with the concept of homeschooling itself or others who had chosen it as their children's educational path, it was just not something we expected, and because it was not something our daughter initially understood or wanted for herself it made it all the harder to embrace.

There were a lot of days in the beginning that made the choice we came to even harder to accept. When too many days would pass where I did not have her next to me wide eyed and ready to learn it made me feel like I was failing her in some way.   Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work.  I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education.  We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that might be some family's reason for choosing to homeschool, that was the one thing that was keeping me from being able to fully embracing it, fear.

Our little girl is now in third grade.  The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her.  What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. While I had no original desires to become a teacher, I had to, for her.  It has been both an exhausting and very rewarding journey to say the least.

I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet.  It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop.  I never know what kind of day it will be, always hopeful we will be able to complete another necessary day of learning.  There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.

Today as I sat there again at the foot of her bed,  reading chapters to her softly drawn eyelids I paused a moment just to take her in.  Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze.  I know we are doing the best we can, and I know we are doing right by her.  The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too.  When you look at where we came from and where we are now I know we are already responsible for her success, together.

Just like Me

"I hope you have one just like you," my mother yelled as I stomped off slamming my door behind me. 

"Me too," I shouted back, sliding my back down the closed door, placing my hands over my tear stained face.  "Maybe then I will have someone to talk to who actually makes sense!" 

The echoes of her devious laughter bellowed down the hallway and off every inch of my mind.  At eight years old, I could not even begin to imagine what could possibly be so funny about that.   

*****

 

"Get back in bed, Chloe," I said without having to look up to see who the small footsteps coming down the stairs belonged to.

"But, my tummy hurts, Mommy."  She peeked her head around the corner flashing her tremendously large grey eyes.  Her lips pressed gently out into an over exaggerated pout.  It was enough to melt anyone's heart immediately, if only I had not seen it a million times before.

"You have already had; a sip of water, an extra hug, five more minutes, snuggles, and your tummy medicine, there is nothing else I can do.  You need to go to sleep."

 

Hysterical sobs began to flood the staircase as she threw herself to the floor.  "But I can't sleep when my tummy hurts, and my room is too dark, and my blankie just isn't warm enough, and and and..."

"That is enough, now go to bed!"

The sounds of her wails grew louder as she pounded up the stairs and slammed her door.  "You just don't love me, that's all!"

I leaned back on the couch, sighing deeply.  My body molding into the cushion below.  Every cell in my body was exhausted to the bone.  As I tried to mentally recuperate from the emotional toils of the past twelve hours the sounds of satisfied snickering came from the right side of the room.  I turned my head to see my father, who was visiting at the time, grinning from ear to ear glaring at me with a crazed look in his eyes, completely satisfied.

"She is just like you, you know."  He leaned back, placing his hands behind his head, enjoying the relaxation I was trying to accomplish.

"She is not.  I was no where near that difficult as a child.  Sure, I had my moments, but I," who was I trying to kid? The more I tried to talk myself out of believing that I had been anything like my daughter, the more I realized she was me, I was her.  As the light bulb went off my father's smile grew even wider, but it hit a sore spot with me somehow, not because there was anything wrong with her, but because I realized I had broken a promise that I had made to myself all those years ago.  I had not tried to make her life any easier than my parents had made mine.  I felt that I was failing her in every way I had promised I wouldn't when my mother cursedly blessed me, all those years ago, with a child just like me.   

 

The thing is the little girl who promised to understand and make easy the life of her future child knew nothing about being a parent.  Eight year olds know a lot about how to be good friends, but know very little about the vast responsibility and time it takes to enrich and shape the life of another person.  I was not looking to become my friends with my little girl, I needed to be her mother, whether or not she was a "gift" bestowed upon me to mirror my own personality. 

There were things I could do for her though.  I could more readily help her find her strengths and teach her to use her weaknesses to her advantage.  I could teach her how to use that pint sized emotional bomb of a personality for good instead of the manipulative road I took with it for many years.  I could remind myself to let her be quirky, because as painful as that awkwardness can be to watch, it doesn't last forever.   I could listen to her talk until my ears bleed, knowing how much she needs to just get her thoughts out of her head.  I could gently lead her to the water time and time again knowing it might be ages before she is comfortable enough to drink from it.  I could cut her sandwiches into funny shapes and play her songs on my guitar knowing those will likely be among her favorite memories when she grows up.  I could give her slack when she makes mistakes knowing she probably already feels way worse about them than I could ever make her feel with a guilt trip.  I could brush her hair, count her freckles, and remind her that every single day I love her more than the day before, so much so that when we touch my heart feels as though it might explode. 

 

Of course given all of those things, the little girl who is just like me, would most likely grow up to be the mother just like me.  I know, because I had parents who did things just like that.  Although I swore I would never say this, I hope when she grows up, she is blessed with a daughter just like her.