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.