Figuring It Out Ourselves

By Sandy on July 19, 2018

Josiah wears a helmet 24/7. He has 5 different ones. Two are soft helmets to be worn at bedtime. Three are hard shell helmets, some with face guards to keep him from punching himself. Without a helmet, Josiah punches his head, cheeks or chin constantly. It seems to be almost a reflex he can’t control.

We work on ‘cool hands’ to encourage Josiah to put his hands in his pockets and keep them there for a bit. We use a weighted vest, wrist weights, compression tubes, and gel padded gloves throughout his day to keep him safe from himself.

His quality of life since September 2017 has steadily declined. We’ve gotten to a better place the past few months (as of April 2018) but without protective supports in place Josiah would self harm continuously.

Thankfully, He Wears a Helmet

By Sandy on April 22, 2018

Josiah wears a batting helmet with a face guard. He wears it all day, every day. It’s big, bulky and cumbersome. It makes eating and drinking a bit more interesting, navigating around the metal guard, but it works.

It protects his face and ears from self injurious behavior.

Prior to the face guard, it was extremely difficult to protect Josiah from himself. For reasons still unknown, he constantly punched his ears and cheeks.

It’s heart wrenching to witness someone inflict self harm and not know how to help. When it’s your child it’s devastating, overwhelming and exhausting. It was beginning to feel hopeless.

Pushing the Limits

By Sandy on January 16, 2018

Last week, after being in the hospital for 3 days, Josiah had a great week. Not just a good week, but one for the books really. It was the first time in a long time he was happy and calm (for the most part), sweet and smiley.

He’s still wearing his big, bulky, probably-too-heavy helmet. The soft one with ear protection was unfortunately much too large. I sent it back and now Josiah LIVES in the Pro-tec skater helmet.

We’ve tried taking it off of him periodically. He resists. Josiah loves wearing a helmet. I’m not sure why. The upside is his ears are getting a break from incessant pummeling and have healed nicely. The downside is he’s started punching other parts of his body.

I’m relieved Josiah stopped punching his ears. Thankfully, they are safe. The rest of his unprotected body is not. A few different times this week, Josiah punched his thighs. The left one hard and often enough to cause a red welt.

You’d think I’d know better than to push my luck, but ever the optimist, I decided to take full advantage of the ‘improved’ behavior and take Josiah to the movies.

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.

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.