It’s Not About Me

By Sandy on April 28, 2019

I started this blog 8 years ago, encouraged by a friend to share our journey. I was hesitant at first. Life at our house isn’t pretty. It’s often chaotic, confusing and challenging. It’s loud and smelly and all consuming.

Why share that with the world?

Once I started writing, I couldn’t stop. Writing it all down as it unfolded became my way of escape. If I wrote about it, I could release it. Capturing all the heartache and struggle; embracing it for what it is, then letting it go became my therapy.

It’s taken me all these years to realize however, NONE of this is about me!

Learning to Let Go

By Sandy on November 27, 2018

Some days are character building days.

We seem to have quite a few of them around here. I’m not my best on days like these. Maybe that’s why they happen so frequently. Maybe I just need more opportunities to do better, to let it all go.

I think if you were here, watching, you might assume it’s going rather well. From the outside, (at least I hope), it appears I have it all pulled together. In the moments when things aren’t going well I jump into action with a quiet resolve to do whatever is required. I’m determined and focused and self assured..

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.