Searching for Answers

By Sandy on September 10, 2017

Josiah has had a rough day. He was up at 1 am thrashing about. He was up again at 4 am, screaming and pummeling himself repeatedly in the ear.

We tried the usual interventions; pain medication, a laxative, a suppository. Nothing seemed to help. We waited a few hours and tried more of the same.

Still, Josiah cried hard, doubled over in pain, unable to express the source of his discomfort.

Last time he punched his ear repeatedly, the poor guy was in excruciating pain from a ruptured ear drum. We had no idea his ear was even infected at the time, treating him instead for severe constipation. So, just to cover all the bases, this morning I put 3 medicated ear drops in each ear as well.

There’s nothing like watching your child in agony, unsure of the best way to help. Getting too close puts us in harms way, yet we need to be with him during these episodes to block the blows. Otherwise, Josiah injures himself pretty badly. He has a goose egg on his forehead, bruising at his cheekbone and his ear is red and swollen.

Backed Up and Bucking

By Sandy on May 22, 2017

What is it with our kids and constipation?

Talk to any parent of a child on the spectrum and I guarantee they will nod in agreement when you mention bathroom issues. I just did a quick Google search on autism and constipation and this is what popped up: Gastrointestinal (GI) disorders are among the most common medical conditions associated with autism. These issues range from chronic constipation or diarrhea to irritable and inflammatory bowel conditions. Understandably, the pain and discomfort caused by GI symptoms can worsen behavior and even trigger regression in persons with autism spectrum disorder (ASD). This may be particularly true of nonverbal persons who have difficulty expressing their distress.

BINGO!

In our case, it’s undeniably true. Josiah is a totally different kid when he’s struggling with GI issues. His behaviors become violent and very difficult to manage. He lashes out at anyone within reach and most often injures himself as well.

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.