And Here We Go Again

By Sandy on October 17, 2017

September 13th we took Josiah to the ER. His self injurious behaviors seemed to be a response to pain and were not improving. It was heart wrenching to watch him so distraught. With no real explanation as to the source of his distress, we set out to find some help. Assuming we were dealing with chronic constipation, the consensus was to insert a tube up Josiah’s nostril and down his throat for a solution called Go Lightly to be pumped through for a bowel clean out.

At 9 pm at night, after a very exhausting evening, it made sense After listening to him shriek, attack himself and us, it was worth a shot. Someone was willing to try something to hopefully shed light on the origin of Josiah’s pain and offer relief. Rick and I were on board.

In hindsight, we should have thought it through a little more carefully.

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.

The Mighty Token Board

By Sandy on June 19, 2017

We’ve been using token boards with Josiah for a few months. His ABA therapist made the first one using characters from Toy Story, his favorite Disney iPad read-along.

Of course, Mama Odie made it on the board even though she doesn’t belong with these guys. She’s been one of Josiah’s favorites for a while. Once he got used to the whole token board concept, we added a second. Token boards are an exchange system in which tokens are given for each appropriate response to a request. Appropriate behavior is token worthy also. In short sessions, Josiah is able to earn a Toy Story character or an adorable dog face to fill up his board. These small velcro pieces are an immediate reward for a job well done with the full token board allowing him access to something extra exciting. Most often for Josiah, that is time with his beads.

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.

Sleep, Glorious Sleep

By Sandy on April 19, 2017

Sleep, or the lack there-of has been a recurring theme over the years. Josiah has notoriously thrived on minimal amounts of sleep for as long as I can remember. Even when we were able to grab some rest after he nodded off at night, it was always more of a nap than a full night of slumber for any of us. Josiah would wake after 3-4 hours, ready to start his happy day, full of energy…very LOUD energy.

Rick and I took turns staying up with the boy. Sometimes it included late night drives to help calm him. Other times it involved doing our best to keep him as quiet as possible while letting him jump, jump, jump on his trampoline. We tried whatever we could think of to lull him back to sleep, rarely with success.

As Josiah’s insomnia raged on, we attempted several sleep solutions.