The Many Faces of Autism

I have wanted to publish a book for a long time… not a book with words or even illustrations.  Just a book of photographs.  I would call it, “The Many Faces of Autism.”  In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.

Most likely, I will never get around to a book of any sort.  But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together.  I have put together a mini sampling of photographs (click on photos for descriptions).  Maybe this is something that only a mother can appreciate.  I really don’t know.

What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders.  I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side.  I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc…  I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection.  This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens.  I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang.  I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.

However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH!  In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was.  These pictures serve as a sharp probe to remind me to count my blessings.  Sadly, I have gotten lost in my own agitation and impatience.  I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles.  I have forgotten that he is funny and sweet and smart and creative!  And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days).  I have forgotten that it’s ok to laugh and smile.  I have forgotten so, so much.  I have a lot of remembering to do, and quite honestly, this overwhelms me.  What if I cannot remember how to get back from where I came?  Perhaps I have never even been “there” and need to forge a new path??  But then I think of Grayson and all that he has overcome and become, what we have become together.  And I know that I can, and that I will, get where I need to go.

 Maybe this is the beauty of photographs.  They capture moments that trigger memories.  And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up.  So, without further ado, I am happy to share, “The Many Faces of Autism…”

(Grouped into the following categories…Obsessions, Firsts, Sad Times,  Progressive Photograph-ability, Sleeping Anywhere, Crazy Moments, Precious Moments and my Favorite Notes from Grayson)

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Autism, Judgment, and Love

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“Levitating” with a shovel implanted in the ground

I am the mother of an 11-year-old boy with a diagnosis of autism and a love for magic, levitating, yo-yo’s and recreating things he’s seen on YouTube.  He makes me laugh and cry harder than any of my other children.  Over the years I have grown pretty thick skin.  I rarely notice the stares if he loses it in public.  I am mostly used to the judgment.  I have been told by a stranger at Costco that I should have left him at home when he pushed his sister.  He has been nudged by the boot of an unknown man and told to “mind his mother” when he was pitching a fit on the floor.  When I locked him out of my car in the parking lot of a mall because he was hitting me, the woman in the car facing mine took off her sunglasses to glare and shake her head at me (I wanted to crawl into a hole and disappear).  To be certain, I am not impervious to these occurrences, but they have become a part of life to some degree; my new normal if you will.

But what I cannot handle, what absolutely dissolves my resolve and shakes me to the core is when someone shows me kindness.  Heaven help us all if a stranger stops and asks if I’m alright or if I need help, or even worse, tells me I’m doing a wonderful job as a mother.  I might actually drop and shed every last tear in my body.  I can be strong and keep a stiff upper lip.  But look at me with concern on a bad day and ask how I’m doing, and you might literally witness my complete and utter undoing.

There are many things in life that I do not know.  But the one thing I do know is this: impulsive judgment without understanding gives rise to anger and bitterness.  It builds walls and leads to retreat or retaliation.  Love however, can undo and rebuild in one swift movement.  It can pluck you out of your small world and drop you into the foreign land of another’s struggles.  In a world confused by what color lives matter,  who can use what restroom, and which politician will cause the end of the world, if we do not respond with love, we will leave only emotional casualties behind.

Consequently, when we find ourselves on the receiving end of unfair judgment, we are left with a choice. We can wallow in the pain, playing the part of a victim.  Or we can choose to release ourselves, and with gratitude, turn our focus to the goodness surrounding us.  We will see what we choose to see.  Even though I have, at times, been enraged by people’s cruelty, it cannot compare with the love that has humbled me over and over again.  I have seen my son bite his teacher and draw blood, and then watched them walk hand and hand into school.  Friends and family have searched for and then cooked meals that are free of the fifty billion allergens we avoid, just to give me a night off of cooking, or to make sure that my son has a special treat at family dinners.  Teachers at his school have given up their personal time so that my husband and I could get away for our anniversary.  I have received phone calls from school because one of my other children had unbeknownst to me, taken the needs of a physically disabled student upon himself, and was carrying the child’s backpack to class every day.  My dad regularly drives an hour each way to take my son to a movie so that I might enjoy a quiet morning in church alone. Finally and perhaps most importantly, I have been on the receiving end of the unconditional love of my son.  No matter how many times I lose it, or become irritable with him, or feel like I’m going insane, he tells me every night at bedtime without fail, “Good night, I love you.  You’re special to me.  I think about you in my heart.  I think about you in my peace.”  I don’t really even know what it means, but it’s beautiful.  Some nights, I brush over it, because I’m just so excited for him to go to bed.  But when I stop and think about it, I can’t really think of anything nicer that anyone has ever said to me.  And once again, I am undone.  Love has overcome the anger and frustration of the day and released me one more time from the snare of judgment (me toward myself this time).  I settle in for the night and fall asleep with the words of Mother Teresa in my heart, “Not all of us can do great things.  But we can do small things with great love.”