Daily Data

By Sandy on November 14, 2017

We keep a Daily Data sheet for Josiah to give us detailed information about his day. It requires just a check mark or brief comment every so often. It used to be much more complicated, calling for more time and effort.

When Josiah was much younger, we sent a notebook back and forth each day to jot down messages between school and home. His teachers would highlight anything of great importance. I would add comments about him from home. It was helpful since Josiah is non verbal, however it gave a very limited view of his day. To be honest, who has time to write a paragraph or two everyday when you are responsible for a classroom full of children anyway?

Hard to Believe

By Sandy on November 13, 2017

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.

Putting on Our Oxygen Mask First Then Doing It for Others!

By Sandy on October 22, 2017

And Here We Go Again

By Sandy on October 17, 2017

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.