Perhaps I Spoke Too Soon

By Sandy on March 17, 2017

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.

Back to the Boxing Ring

By Sandy on October 6, 2016

Josiah is beating himself up again. He’s not sleeping. He’s refusing to eat much. He’s having a difficult time this week. It’s reminicent of the way he was behaving in August of 2015, right before he ended up spending 1 week at UTMB, then 10 weeks at Health Bridge Children’s Hospital.

Monday he had some mild sedation for a GI procedure called an anorectal manometry to check his sphincter muscles. Everything was normal. No need to see that specialist again until December, we were told. I’m not so sure.

Tuesday he started sliding down a slippery slope. Tuesday was also the very first night we had our 1 – 6 am caregiver. Josiah started his happy day at 2 am, bouncing wildly at 6 am when I got up. The caregiver worked last night also. (God bless that woman and thank you Jesus for sending her!) He was up by 1:30 and now 9 hours later, showing no signs up being tired.

He is however attacking himself. His left ear is turning purple and starting to swell from the repeateded punches. He has begun to pull his own hair, hard. He screamed most of the morning with tears streaming down his face as he attacked himself and us.

2 Days is All it Takes

By Sandy on September 29, 2016

Josiah’s amazing caregiver salvaged what remained of the tattered tent, sliced it down one side, draped it over the wooden frame and created a fully enclosed bed, comlete with a zipper. She did this while Rick and I were out for the afternoon. She totally surprised us. We would have thrown the tent out.

Her genuis plan bought us more time. If you peer through the netting our backwards jammie clad boy is sleeping soundly. The zipper is closed, the tent is secure. All is right with the world.

The first night was a success. Emphasis here is on the FIRST night. As with most things, given enough time, Josiah will problem solve his way through it.

Searching for a Solution

By Sandy on September 25, 2016

Life with Josiah revolves around 3 things: sleep (or the lack thereof) the bathroom and food. Throw in some head banging, a little hair pulling, a bit of bouncing and you get the full picture.

We’ve been dealing with insomnia for so long, I can’t believe it continues to be an issue. Surely, by now we should have figured out something to keep this boy in bed at night, resting peacefully.

The do-it-yourself staple gunned, netted bed worked initially, but like everything else with Josiah, only for a while. He’s a clever one. Given enough time, Josiah figures out how to outsmart us at every turn. He ripped a hole in one side of the netting which gradually grew larger over time. He mastered pushing the bed away from the wall and now climbs out with ease. Our homemade enclosed bed no longer encloses our boy.

If You Can’t Beat Him

By Sandy on September 11, 2016

These photos were taken this week.

Notice how peacefully Josiah is sleeping in all of them. Notice these are all taken during the day when he is supposed to be wide awake?

Last night Josiah was up, loud and bouncy 4 times. I’m not really sure he went back to sleep at any point during the night. For all we know, he was wide awake in his room the entire time, only vying for our attention when absolutely necessary.

Unless we find someone who wants to work the night shift, I will unfortunately have to become nocturnal like the boy.

The sun is up and it’s a gorgeous day. Good night everybody.