The ‘New’ Josiah

By Sandy on February 21, 2017

Four months ago life was rather difficult. We were in a bleak, dark place with Josiah. He wasn’t eating, he was barely sleeping. He was beating himself up. We were precariously close to another hospitalization it appeared.

All these weeks later, I’m elated to tell you, we survived the storm.

With many answered prayers, a tremendous amount of assistance from an incredible support staff and divine intervention in the form of huge blessings (which have greatly improved our lives), we are in a much better, joyful place.

Today, Josiah is a different kid. He’s sleeping, actually SLEEPING…sometimes for 10-12 hours a night. He’s eating really well and rarely has any self injurious behavior. He now wears underwear, helps make cookies and smoothies (some of his favorite snacks), does chores around the house and is most often agreeable to trying new things and venturing out to unfamiliar places.

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.

Living in Mama Odie Minutes

By Sandy on October 2, 2016

Three years ago Josiah had no interest in his ipad. We thought it would change his world, give him a voice, allow him to communicate with us. Instead, he tossed it aside.

He has never been the kind of kid to sit for hours on end engrossed in passive entertainment. He ignores T.V., preferring to turn it off rather than attend to it. He rarely pays attention to the large screen at movie theaters (until the credits roll) and only stays in his seat if he has popcorn.

One of Josiah’s initial objectives was to endure the ipad for 5 seconds. It required persistence and consistency to attempt such a lofty goal. Five seconds felt like an eternity.

We rarely left him alone with his ipad for fear he would break it.

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.

Nectar of the Gods

By Sandy on September 27, 2016

Are you sleep deprived? A snooze button abuser? Tired of being exhausted? It comes with the territory. Sleep deprivation is quite common for those raising a child with special needs. It can go on for years with no real end in sight.

At one point, I was a full time Kindergarten teacher, raising 5 kids, zonked out on the couch an hour or so before dinner, every afternoon. I had no energy. I was physically drained. All I could think about was getting through the day to get to my nap, then getting through the evening to get to bed. This, my friends was back in the day when Josiah was actually a decent sleeper, though I find it hard to believe it was ever really true of him. It feels like he’s been nocturnal his entire life.