What is it with our kids and constipation?

Talk to any parent of a child on the spectrum and I guarantee they will nod in agreement when you mention bathroom issues. I just did a quick Google search on autism and constipation and this is what popped up: Gastrointestinal (GI) disorders are among the most common medical conditions associated with autism. These issues range from chronic constipation or diarrhea to irritable and inflammatory bowel conditions.  Understandably, the pain and discomfort caused by GI symptoms can worsen behavior and even trigger regression in persons with autism spectrum disorder (ASD). This may be particularly true of nonverbal persons who have difficulty expressing their distress.

BINGO!

In our case, it’s undeniably true.  Josiah is a totally different kid when he’s struggling with GI issues.  His behaviors become violent and very difficult to manage.  He lashes out at anyone within reach and most often injures himself as well.

Recently he was in such pain and distress it took 2 of us to protect him from serious self harm.  It started with 3 quick blows to his head then rapidly escalated to intense, repeated head banging on the floor.  It happened so fast, we were startled by the violent outburst.

Josiah’s ‘new’ amazing caregiver grabbed a couch cushion to pad the carpet as we struggled to block him, but almost immediately we saw blood and a large goose egg erupting on his forehead.  Did he bite his tongue or cut his lip?  He was frantic, thrashing about uncontrollably.

We did our best to get him to the trampoline in his bedroom, thinking the jumping would help calm him. Momentarily, it did, but he bounced wildly, screaming and crying while lunging toward the window sill. The blood kept coming and as best we could tell Josiah had a gash in his head.  His hair was wet and turning red in the front.

Grabbing my phone I called Rick, “You need to come home right away.  Josiah needs to go to the hospital. He’s out of control, has a huge bump on his head and he’s bleeding. I think he’s going to need stitches.”

It made no sense to summon Rick at work.  It would have made more sense to race Josiah to the ER myself.

But in a moment of panic, that’s what I did.  I called my husband.

Meanwhile the trauma continued with the caregiver and I sweating profusely as we scrambled up on the trampoline to block Josiah from further injuring himself.  His response was to attack us.  He scratched, grabbed our hair and slapped us.

Realizing the trampoline was not the answer, I suggested a bath.  Josiah loves taking baths. The warm water soothes him.  I’m not sure how we did it but we got him off the trampoline, and quickly undressed as he was thrashing about. We got him in the tub that I had started to fill a few minutes before and suddenly discovered this was a horrible mistake.

Josiah started plunging his head under the water to smack it against the bottom of the tub.  Then he stood up and tried to whack it against the tiled wall.

Clearly the tub wasn’t going to work either.

We whisked him out of there and off to the bathroom to sit on the commode.  I planted myself between Josiah and the wall to prevent more head banging and the caregiver sat on his other side.  Josiah whacked his head against his knees and actually bounced up from the toilet to try and slam his head against the ceramic tile floor.

A few minutes later, Rick walked in the door.  Josiah was calming some by this point, with periods of rest between outbursts of pain.

Rick gave Josiah a suppository which involved all 4 of us crammed in a much too small bathroom, struggling with flailing arms and legs to get the job done.  It took a while but was ultimately effective.

Here’s the thing.

Josiah’s pain was so intense, his only recourse was to inflict self injury.  Clearly he was suffering.  But without words, he was unable to let us know exactly what he was feeling or what was hurting.  That’s heart breaking.

For YEARS he has been dealing with various levels of what we now believe has been constipation pain but has been unable to express any of it.

With the help of his GI doctor, a new low FODMAP diet, increased exercise and lots of prayer, we are working to remedy this situation.

We aren’t out of the woods yet as was evidenced by this most recent horrific episode but hopefully, we are on the right path.

The new caregiver had only been on the job for 1 week at this point.  She had no idea Josiah had this side to him and quite frankly I hadn’t adequately prepared her for it. She was incredible, quick to respond and with me every step of the way.  Without her help it would have been much, much worse.

As it turned out, all the blood that gushed from Josiah’s head was caused by a very tiny cut no longer than the tip of your baby fingernail.  No stitches or hospital visit required. The goose egg on his forehead, checked by the nurse practitioner at his pediatrician’s office subsided in size after some ice applications.  A few days later it was barely noticeable.

The most amazing miracle of this whole episode?

The new caregiver didn’t quit!