Hard to Believe

Josiah struggles with self injurious behaviors, including punching himself in the head. The time between ‘episodes’ has been growing shorter and shorter while the intensity of each incident has been worsening.  It’s painful to witness.

It appears to have started in early May of  this year.  At least that’s what Rick and I shared with the hospital staff in September and October.  But I seem to recall some behaviors earlier in the year as well.

You’d think as parents, focused on ensuring the best for their child, remembering all these little details would be second nature, but apparently not. I’m here to tell you it’s been going on for a long time.  Much longer than I ever imagined and that’s so hard to believe.

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And Here We Go Again

September 13th we took Josiah to the ER.  His self injurious behaviors seemed to be a response to pain and were not improving.  It was heart wrenching to watch him so distraught.  With no real explanation as to the source of his distress, we set out to find some help.  Assuming we were dealing with chronic constipation, the consensus was to insert a tube up Josiah’s nostril and down his throat for a solution called Go Lightly to be pumped through for a bowel clean out.

At 9 pm at night, after a very exhausting evening, it made sense  After listening to him shriek, attack himself and us, it was worth a shot.  Someone was willing to try something to hopefully shed light on the origin of Josiah’s pain and offer relief.  Rick and I were on board.

In hindsight, we should have thought it through a little more carefully.

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Searching for Answers

Josiah has had a rough day.  He was up at 1 am thrashing about.  He was up again at 4 am, screaming and pummeling himself repeatedly in the ear.

We tried the usual interventions; pain medication, a laxative, a suppository.  Nothing seemed to help.  We waited a few hours and tried more of the same.

Still, Josiah cried hard, doubled over in pain, unable to express the source of his discomfort.

Last time he punched his ear repeatedly, the poor guy was in excruciating pain from a ruptured ear drum. We  had no idea his ear was even infected at the time, treating him instead for severe constipation. So, just to cover all the bases, this morning I put 3 medicated ear drops in each ear as well.

There’s nothing like watching your child in agony, unsure of the best way to help.  Getting too close puts us in harms way, yet we need to be with him during these episodes to block the blows. Otherwise, Josiah injures himself pretty badly.  He has a goose egg on his forehead, bruising at his cheekbone and his ear is red and swollen.

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Backed Up and Bucking

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.

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Perhaps I Spoke Too Soon

The very day I wrote about the NEW Josiah he began hitting himself in the head.  I sat stunned, just outside the bathroom door, watching as he repeatedly pummeled himself hard.

Over the past couple weeks it’s gotten progressively worse. Self-injurious, aggressive and destructive behaviors are escalating.  OCD behaviors are cropping up.  Hyperactivity is intensifying and there are intermittent bouts of screaming throughout the day. Yesterday, he scratched one of his therapists pretty badly.

This is why I am hesitant to respond when asked how Josiah is doing.  It’s an ever changing path we walk with this boy. We truly never know.  Just when we think it’s predictable and we have figured out the ‘magic’ formula to keep things on an even keel, the rug gets pulled out from under us.

I can’t imagine how it must feel for him.

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