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)
“OBSESSIONS”…Anything that rolled…
…had to be lined up perfectly and no one could even walk near his line.
The dishwasher rack, bringing up the rear…
His first attempt at marble ramps…made with parts he found while searching through construction dumpsters (unbeknownst to me)!
Marble ramps at midnight because he just couldn’t sleep.
Cup Stacking
(Cups Falling)
Roller Coasters and Water Slides (he’s “riding” on a roller coaster in this picture by making the branch shake).
Dumpster Diving to find parts for marble ramps
Levitating
Levitating
DIY Ostrich Pillow (he saw it on an informercial and wanted one soooo bad!)
He finally got a REAL ostrich pillow!
“FIRSTS” First time tonsils got removed (they grew back)!
First day of preschool. He was thrilled.
First time he intentionally and willingly smiled for a picture.
First eye appointment that he sat through and cooperated in.
First pair of glasses
First time having a friend over
First lost tooth
First time not freaking out near a costumed character
“SAD TIMES…” His cheeks would get so red and hot from food sensitivities
Food rash
Last Krispy Creme doughnut he ever ate before going off gluten
Sad cry
When he banged his head on the dresser wrestling with my sister and didn’t even cry!
“COSTUMES…” I have no idea. But those are definitely underwear on his head.
Pirate
Cheetah
???
He just needed the padding to sled down the stairs
Obviously a tough mudder…
Scuba Diver (note the plastic bag to keep him dry). He actually tried getting in the lake to see if it worked.
Magician
Parachute Jumper
3D Glasses
Clearly…Wolverine.
“PROGRESSIVE PHOTOGRAPH-ABILITY…”Not liking photographs or me this day…
Not so thrilled about having his picture taken for this school project.
Attempting to cooperate with school project…
Still not liking photographs (look hard for him).
The first picture EVER that he asked to have taken!!
“SLEEPING ANYWHERE…” Stairs…
Chairs…
Stairway…
Front porch…
With “sunglasses…”
With hand supports and “sunglasses.”
With a broken neck, basically.
“CRAZY MOMENTS…” The time he was worried about getting hungry at night, so he packed a bag of ham for bedtime.
Note the ham in the bag on his bed…
The time he tried to comb his hair…
The time he made a slide…
The time he tied a sheet to his head so that he could swing from the banister down the stairs…
The time he destroyed his door and got to paint it to make it “pretty” again…
The time he taped himself up and tried to run through the school parking lot in his pajamas…
The time he got to play with gramma’s leaf blower…
The time he woke up Saturday morning and wanted to watch a documentary on George Washington…
The time he needed to dry his eyes out…
The time he “found” a balloon (at the neighborhood model home) and rode all the way home on his bike with it…
“PRECIOUS MOMENTS…”
When he read “Jorge el Curioso”
When I told him he looked cute in his brother’s hat…
Kindergarted graduation when he cried the whole time and then decided it was actually fun…
When his sister talked him into a tea party…
When he was trying to count to 116 on his fingers…
When his sister was crying after a death in the family and he comforted her…
“MY FAVORITE NOTES FROM GRAYSON…” He clearly likes food.
Translation…”I’m a poor person. I need money. I want to live in a new family.”
“I love you mom. You rock mom.”
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