Wednesday, April 4, 2012

Step 4: The Pain of Autism

Yesterday was a painful day in the world of autism. Some absolutely insulting headlines, the insult of "celebrating" an epidemic that is running rampant, and the murder of an innocent child with autism by his very own mother.  Those of us who have been around for a while, are simply resigned to the fact that April is going to be a painful month of all kinds of awareness, yet no real action.  So I feel it's only appropriate to go ahead and acknowledge some of the very real and very painful aspects of autism. 

* The kidnapping by autism of innocent children.
* The head banging.
* The physical pain a child feels yet can't express.
* The wandering away.
* The drowning.
* The killing of that child with autism from mothers who could cope with it no longer.
* The bullying.
* The abuse in public schools.
* The abuse, neglect, and murders in state schools and institutions.
* The pain of having to endure another senseless study on autism being a mother's fault or a bonding issue.
* The pain of wasted money on genetic research.
* The pain of having to read headlines about "blooming" out of autism, as if autism were a fragrant bouquet you want to adorn your house with.
* The pain of seeing no significant headlines about autism as a national emergency, a crisis, an epidemic.
* The pain of not being able to afford a treatment that could help our child.
* The pain of waiting years for services, knowing that with each day that goes by, it will be that much harder.
* The pain of not being able to find a doctor to help.
* The pain of knowing your child is being segregated at school.
* The pain of knowing your child is just being babysat at school, not taught.
* The pain of realizing you will die one day and won't be there to protect your child.

I do choose to live my life as joyfully as a I can, but I'd be a liar if I said autism wasn't painful.  It surprised even me how fast I typed that entire list with not one millisecond's pause for thought. I'd probably scare myself if I actually took a bit more time to think about adding more.  I'm afraid that list would be four times longer, if not longer than that.

Autism is painful.  I would dare to venture that it's the most painful disorder a child can have.  My son is very severely affected by autism.  He is non-verbal.  He has GI disease.  Because of uncontrolled seizures, he is cognitively affected.  I'm not going to compare apples with apples.  If a child has a disability, that is a sad thing.  I would wish no disability or disorder on any child.  You can't compare your situation, your hardships, with anyone else's unless you've walked in their shoes.  But what I can say, is that with autism in the way my son (and many, many others) live with it, it affects every stinking aspect.  A child who has cancer can typically talk, they can read, write.  A child with diabetes can learn, go to school, get married, etc.  With so many childhood disorders and diseases, the child can live a pretty typical life in other aspects.

But autism... not only does it outnumber most diseases or disorders combined, but the effect on the child by it, the way it's manifested in the child, -- is also greater than most individual diseases and disorders combined.

I remember a painful episode early on in autism, when my son would scream and scream and scream.  He would be fine, then just scream and scream.  Inconsolable.  I searched that boy high and low for an obvious sign of what was hurting.  My son cannot talk.  He cannot tell me what hurts.  So I must constantly be in tune to his body for him.  I could see no obvious disfiguration that he maybe broke a bone.  No swelling indicating a sprain.  No cuts, no bruises, no rashes, no nothing.  So for a couple of days that went on.  His pain in hurting. My pain in not being able to figure out what was hurting. Then one day I noticed his hand at just the right angle when he held his straw between his fingers just so.  And I saw them.  Two blisters on the inside of his middle finger.  He had blisters from being burned by something.  Perhaps my curling iron, the stove, who knows.  But anytime he would hold something just right, it would rub those blisters and hurt!  He didn't even know to point to what hurt.  He couldn't sign what hurt.  He couldn't speak what hurt.  He couldn't write a note about what hurt.  He couldn't even draw a picture of what hurt. But yet he hurt.  And at times still does for some reason. You can't know the pain in what that does to a mother.  That he hurts and can't share it.  That he hurts and I can't figure out why. That he could be hurt by others but can't tell me who hurt him so I could make sure they never hurt another person ever again.

I had that painful experience once as well. Our son was in a day activity program.  All seemed to be going well, he seemed to like it, my husband and I certainly liked the break.  But I noticed after several months that once we got close to that building, he would start to get agitated.  I never thought anything about it.  Then the closer to the building we drove, the more agitated he became, almost crying by the time we got to the parking lot.  I knew then something was wrong.  Very wrong.  That day I turned the car around in the parking lot and we never went back.  Brandon stopped crying the instant we got away from that building.  I don't know what started happening there to make him that afraid, but the fact that my son had such emotion told me something. Something painful.

That is the pain of autism.  The things we'll never know, that we'll never find out, that we'll never fully be able to trust in the way other parents can. That we'll always fear the what if's.  Typical children can tell their parents if something is wrong.  They can point, draw, tattle.  My son can't.

That is the part of that pain that is hard for society to see in any awareness campaign.  Yes, there are many painful things we deal with on a daily basis.  Yes, we've learned to cope and have learned how to not be crippled by that pain so we can care for and love our children who have disabilities while not living disabled lives ourselves. But it's still there, the pain that for us will always be different than any typical parent's pain regarding their typical children.  You expect to worry about your teenager the first night they go out with a new drivers license all by themselves.  That worry, that heartache in waiting until they are back home is normal. Knowing that your sixteen-year old will never drive a car to cause you such grief, isn't.  That's not a worry, that's not a heartache, that is very real pain.  You expect your teenager to be hurt by their first broken heart.  You expect that it will hurt you worse than it hurts them. But that's a normal part of life that you can survive with momentary heartache.  But that your son might never have a girlfriend, his first kiss, his first broken heart?  That is the pain I'm speaking of.  That is the kind of pain that is not normal. That is the kind of pain so very many of us deal with (and extraordinarily overcome) daily.

I've also experienced for years the pain of knowing something was wrong but couldn't find any doctor who would help me figure it out.  The doctors who would simply prescribe something for the outward behavior were a dime a dozen.  But finding a doctor who would help me find the cause of the hurt, which caused the behavior, and actually know how to treat it, --- that was an elusive dream.  I was left feeling like a hypochondriac mother who was making up things.  I was told that the dozens of daily episodes of diarrhea he was having for eight years were "just autism" and thus "just normal."

Can you imagine that pain?  Knowing something was wrong but not being able to find someone to believe in you?

If my child had a broken arm, I could go to the emergency room and they would know how to fix it.  If my child had cancer, they could look at his symptoms and run tests to confirm that, then treat that.  But with autism, most tests come back normal.  The ones that come back abnormal are written off as "just autism" because if they don't know what that could mean, then obviously it must not mean anything!  There are no autism specialists in Pediatric offices.  There are few in medical centers.  And most of those, only prescribe drugs for the behaviors.  They don't search for the cause of the behavior.

Can you imagine how terribly painful that is?  To have your child written off as "just autism" when you know in your heart that it is something other than "just autism?"

It was Dr. Krigsman who we found as someone who would actually listen to parents and who knew what was wrong with these kids and who knew how to treat them properly.  He knew these kids had issues other than "just autism" and he was an absolute answer to prayer for us.  About the time we went to Austin to see him to have Brandon scoped, I had read a book of poetry by Marshall Ball, who was a boy who had multiple disabilities but who could through a painstaking process, share his thoughts. To this day in my Bible there is a worn piece of paper I printed out from an online entry of Marshall's on his website that reads simply:




I printed that out and took it to Austin with me.  That was my hope.  My last ditch effort to get help for my son.  Those words expressed everything we ever wanted from a doctor.  Someone to be kind, to show our son but a fraction of the love we had for him. Someone to listen to us.  Someone who would give us answers. Dr. Krigsman was that man for us.  He came out to my husband and I after the procedure to show us the pictures of just how bad Brandon's gut was, the inflammation, the lesions, the erosion.  He was probably surprised by our jubilation, but that was one of the best days of our autism journey.  Finally, vindication.  Finally, we weren't the ones who were crazy parents dreaming up something being very wrong and dreaming that our son was having chronic diarrhea for eight years! We were validated. We had a very real medical diagnosis that was not "just autism".  We had a very real treatment plan and a very real promise from him that our son would be healed of his diarrhea.

We had found someone to take away at least that aspect of our pain.

That aspect of our son's pain.

And that is what's truly priceless.