Thursday, February 18, 2016

Turtling and Pooping

We saw a new pediatrician yesterday.  While my son started the visit hiding under the waiting room furniture, we all left feeling more hopeful and validated than we have in months.  You see, until you have a child with autism, you really can't understand how grossly uneducated the majority of society is concerning the struggles and issues autism throws at you. 

Now, I promise this will not strictly be a "poop talk."  But, it will start that way...

You see, we have been concerned with our son's chronic and severe constipation for years. Countless times, we've brought it up with multiple doctors, only to be told it was a) likely a behavioral issue, b) he needed to increase his fiber, c) we should put him on a stricter bathroom schedule, d) it was perfectly normal for kids his age, and e) all of the above.

We've presented in the emergency room multiple times because of a small boy who was doubled over and screaming in pain because his abdomen hurt so badly. 

Last fall, when I made an appointment with the family doctor we used at the time, I demanded he be examined because we were almost positive our son had the beginnings of a partial rectal prolapse.  Again, we were told after a brief exam that our son was "fine" and we should get him a fiber supplement and put him on a better bathroom schedule. 

Fast forward a few months.  I find my son in pain in the bathroom and see a huge prolapse that warrants an immediate trip to the emergency room.  We choose a different ER.  An ER that we drive an hour and a half to access.  And finally.  FINALLY.  Armed with a detailed narrative and graphic cell phone photos, we see a physician's assistant that takes us seriously.  Two days later, we present at a new pediatrician's office (the same hour and a half drive away) and spend nearly two hours discussing my son, his physical issues, and discoursing on and ruling out possible causes for his GI issues.

Why was this visit so different from all those times at the family doctor and the ER when they told us our son was fine, just acting out because of anxiety or not wanting to go because he was "too busy?"

Because this lovely physician has a son with autism.  Like ours. 

We are on the right track now to finding out the cause for our son's GI issues.  Amazing things happened that no one has ever bothered to do for him, like blood work and actually reading his prior evaluation records. 

We are hopeful, maybe even confident, that we will find a cause to our son's discomfort, his pain, his miserable struggle that has been "going potty" for far too long.

So, this post is kind of about poop.  But it's mostly about awareness.  And education.  And being a relentless advocate. 

Because parents shouldn't have to figuratively (or literally) stand on chairs and scream to be heard.  My husband and I are the parents of a highly intelligent and highly verbal child.  Who has autism.

He can speak.  In fact, he speaks incessantly.  About Star Wars.  About Pokemon.  About planets.  About his beloved dogs.

The number of times a day, no, a week, he communicates something relevant about his feelings or his health or his needs?  So rarely that the household screeches to a stop to listen when it happens. 
More often? Never.  Zilch.  Nada.

Because speech does not equal communication.

And just because my son has autism.  Just because we live in a rural area.  Just because I have to be my hyper-verbal nearly 8 year old son's voice most times.  Does NOT invalidate his health.  His well-being.  His quality of life.

As a parent, I have been in "turtle mode" for months.  I have struggled with knowing something is not right, but feeling beaten down and guilt-ridden because over and over again we've been told our son is "fine." 

Listening to a doctor with a plan to help my son feel better, to discover the root cause for his digestive issues, and even do further testing for other concerns I've brought up over and over, only to be rebuffed by countless other 'professionals'......

Well, I was kind of like a turtle who has been moved out of a traffic-filled highway, only to find himself safe in a cushion of green grass close to a shady tree and a clear, cool stream to drink from.  

I can finally poke my head out of my shell a little.  Test the air.  Smell the grass.  Maybe even take a few steps toward the stream. 

My turtle shell had morphed from safe place to prison, and I'll stand for it no more. I want the grass, the fresh air, the cool water.  I refuse to hide in a shell prison, forced there by the ignorance of others.

My son, "turtling" for real.

I don't have an answer that will fix the problem of the (in our experience), vastly under-educated medical community concerning autism and the potential of related physical and mental health issues. 

But I can urge you, as parents, that though your autism dance may be one step forward and one step back; NEVER stop dancing.

Never stop advocating.  Never stop screaming from the rooftops and demanding to be heard.  And if you're in full turtle mode like I have been, don't put up with those that make you feel forced to stay inside where it's safer.  Find the ones who are willing to risk the traffic to get you out of the highway.

And hold onto them.