Nail Care Nightmares

By Sandy on June 21, 2021

Can any of you relate? Your loved one’s nails are incredibly long, desperately in need to of a major trim. For the purposes of this scenario we will stick to toe nails, lovely glorious, Lord, WHY do they have to grow so fast, toe nails. Have you ever seen such nails? Can you picture in your mind what they look like? Let me just add, they are THICK.

Now imagine it’s your task to trim those nails to a neatly manicured length. And imagine your loved one has no desire for you to get within even 6 football fields of his feet, let alone up close and personal to his toes. Imagine attempting to trim not just one but all 10 of those toe nails! It’s paramount to risking life and limb. Are you up for the challenge?

Quite frankly, I’m not. Read more…

It Takes a Village

By Sandy on April 30, 2020

So much for the self-imposed isolation. Two weeks in we enthusiastically raised the white flag, announcing we were done! There are only so many days one can thrive with limited sleep at night, then provide constant care during the day. Rick and I just aren’t that young and energetic any more. We had to weigh the risk of bringing caregivers back into our home versus the risk of sheer exhaustion. It was a difficult decision.

It became less and less difficult as time wore on.

Self-Imposed Insolation: Day 1

By Sandy on March 21, 2020

This morning we began our self-imposed Shelter in Place. We plan to leave the house only if absolutely necessary (just to clarify, car rides for Josiah are absolutely necessary…today we took 2 of them) and to limit contact to immediate family members currently living inside our home. To keep Josiah as healthy as possible, it is the right choice for our family.

That means none of Josiah’s caregivers are working with him.

Rick and I are flying solo. Or would that be duo?

Helmet Head for Life?

By Sandy on August 11, 2019

In November, it will be exactly 2 years Josiah has been wearing a helmet for self-protection. TWO YEARS!

We were given a padded helmet at Texas Children’s Hospital September, 2017 and assured Josiah’s raging outbursts were not a result of constipation but most likely related to a teenager with Autism who needs additional psychiatric medication.

At the time I shuddered to imagine my son in such distress he needed protection from himself. I couldn’t envision a life in which he would need a helmet for difficult moments.

Little did I realize then, Josiah would need to wear it most all the time, not just during difficult moments. Little did I realize then, the helmet they provided at the hospital wouldn’t suffice. Josiah would need something sturdier. He would need something to cover his ears. He would need something to shield his face and his eyes. Little did I realize then, Josiah would be wearing a helmet for a very long time.

He even sleeps in it.

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.