Friday, April 6, 2012

Step 6: The worst of autism.

Today is Good Friday.  For Christians, it's the day Jesus died on the cross for our sins. I guess you could say in a sense, though "good" for us, it was a very, very bad day for Jesus the carpenter -- the flesh and blood man who could and did, feel pain.

So it's fitting that on this "Good Friday" -- I share about my worse day of autism. Mentally I suppose, in having to comprehend so many emotions I could not even begin to comprehend.

I've had to debate over and over about this, but if I'm doing this personal project about autism awareness, geared more for those who don't live with autism daily so that they could have a sense of just how all encompassing it is for the child, for the family, -- then I simply have to share the truth of each aspect of it, no matter how good, bad, or in this case, ugly.  And trust me, if this step is hard to read, then you've come a bit closer to understanding a life that for us is sometimes very, very hard to live.

The very worse day of autism for me was the scene (crapisode -- as it's sometimes referred to in the autism community) I walked in on one evening.  Though I think even crapisode wouldn't do justice to that scene.  It was quite literally the most horrendous scene I've seen or smelled in my life.

I had momentarily left my son sitting in the tub splashing in the water as he loves to do.  He was nine years old, and this was before seizures when I could actually leave the room momentarily to stir dinner or something then come right back.  In the one or two minutes I had left the room, he got bored with splashing in the water and went to get the diaper pail to play with.  The full diaper pail.  My son had very chronic diarrhea at that period in his life and so our diaper pail was always very full.  Our thirteen gallon tall trash can that we called the "diaper pail".  He got back in the tub with the diaper pail and dumped it in the tub water so he could play with the bucket.  He didn't know to dump the contents on the floor first, nothing like that.  No, he dumped the entire contents in the tub, and the scene I walked into horrified me.  That's not even strong enough a word to describe the rage, the anger, the total disgust and complete disbelief at what I was seeing.  Let alone the stench. How do you describe what hell must have smelled like?

And there in the middle of it was my son as if nothing were wrong with that scene.  Laughing and playing with the bucket.  Sitting in a tub full of .....  sludge. 

Even sitting here reliving that day, I can't even begin to paint a picture of how low that moment was.  How every ugly thing about autism the diagnosis, manifested itself.  How it took from my son the knowledge of knowing not to do that.  Not to dump a bucket full of dirty diapers in the tub and then get in it to play. Soak in. That his favorite thing to do as a nine year old was to even play in the tub and not outside with friends playing cowboys & Indians or busting the neighbor's window playing ball. That he would have done that again if I didn't make my husband put a lock on the closet door.

Parents have those stories.  Though I can't fathom any of them worse a sight than mine, I'm sure there are worse stories. Children with autism who have such terrible bowel disease like mine does, and who don't know that it's not appropriate to not eat it, play with it, smear it on themselves, the bed, the walls, the floor.  That happens to so many parents and it just cuts to the core of exactly how devastating autism is with the multitude of ways it affects our children.

Even with all the "awareness" out there, I still feel we're missing such a huge "reality check" for so very many of us in the way autism affects our children and our families.  Perhaps if pregnant mothers understood all the ways autism affected a child, they would be more convinced to heed the warnings to not vaccinate in a way that may lead to a diagnosis of autism in their own child. 

In that moment all of the ugliness of autism that we have experienced thus far flashed through my mind.  Like if my son were to see a piece of food he likes on the floor, no matter how long it's been there or what was crawling on it, he would pick it up and eat it.  He does not differentiate as his typical peers could.  No matter how many ant hills he steps on and gets horrendously bitten by, he will still not know to look for that and not step on it next time.  No matter what is left in a cup on a counter, he will drink it.  Not knowing he should look into it first to see if it's grease skimmed off turkey gravy or the water paint brushes were rinsed in.

All of those things and more came at me like a speeding bullet. No matter how good I've been at accepting the diagnosis, dealing with it, doing my darndest to overcome it, no matter how much good I had stored up about how I was going to defeat autism, it was no comparison to the onslaught of emotions toward autism that engulfed me in that moment.

My hopes with writing these is for "typical" people to see how "on guard" a parent must be --
24/7/365.  How nearly impossible it is to prevent every possible disaster no matter how hard you try. How the child will find a way out of the house, the yard, and wander right into traffic to die or into a pond to drown.  How no matter what the age, all of these things will be a very real concern to the population of children, youth, and adults who are severely affected in the way my son is.

That day, in that moment of seeing what I saw, -- was the moment all the ugliness of autism collided.  It was the moment that I only saw the ugliness and had no room left to see any beauty except for my innocent son who was sitting there smiling at me.  That moment is why I do, and always will, cringe when I hear or see the term "celebrating autism awareness".  I "celebrate" autism awareness about as much as Mary, the mother of Jesus, "celebrated" seeing the crucifixion of her son on the cross.

Why do I share this disgusting story on Good Friday?  I guess because I can in my own human, mother-of-a-son-with-autism way, I can somewhat relate to this day and what it meant for Mary in how Jesus, her innocent son, had to endure such degrading humiliation and die such a disgusting death on a cross.  He was innocent.  He didn't do a thing to deserve all the things done to him.  I can't imagine what she was thinking as she saw her son standing there with his disfigured face from the swelling and the blood dripping down it, his torn flesh from the lashings.  I can't imagine how she could watch her son carry the cross he would be brutally nailed to.  I can't imagine that even knowing as she did, that she was God's chosen one and that her son was the Savior of a world -- was of any comfort to her at that moment. 

I can't imagine that for Mary, but I do know that for me, Michelle, -- how awful it was to see my own innocent son, my flesh and blood, in that tub, in that sludge, because of a diagnosis he didn't deserve.

If anyone would have said to me at that moment how I should feel special as the chosen mother of the special blessing of a child who has autism -- I would have throttled them. In fact in that moment of time if anyone would have said that to me, I would have nailed them to a cross myself and asked them how special they felt.  Or duck-taped them in the tub of a pasture's worth of cow dung so they could soak in that to consider how special that was.

No, the mother side of Mary was most likely not feeling particularly special or blessed.  She was probably asking what I asked, what I screamed --


Why did this have to happen to him?
There's a saying that goes, "The only way out of hell is through it."   And through a tub full sludge I went, thinking to myself between the gagging and the choking....


After every Good Friday there is an Easter where we can rise from whatever the worse day of autism  brings us, and warrior on....