PHEW!!

By Sandy on August 7, 2019

It’s been a rough and difficult summer. For reasons still unknown, though I have very strong suspicions, Josiah spent much of these past few months screaming. Screaming may not be the best adjective but ‘crying’ just doesn’t seem to adequately describe the painful noises we all became accustomed to most every day.

He was in the hospital 3 times and sent home 3 times with no answers, no great insight, no helpful protocol to alleviate whatever it was causing him to shriek. I truly believe he was such a difficult patient it was easier to tell us, “Take him home where he will be more comfortable and see if that helps.”

It didn’t. I knew it wouldn’t.

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.