ETB 50: Ever tried to trim a child’s toenails? Now imagine that child has sensory issues that make the task as perilous and nerve-wracking as a high-wire act. Join me, Sandy Deppisch in this candid discussion on Embrace the Blessing podcast, where we navigate the choppy waters of personal grooming for children with disabilities, specifically, trimming toenails. We share my personal struggle with my son Josiah’s toenail trimming, a task that ended with exhaustion and frustration, yet also highlighted the resilience and strength of such special children.

In this heartfelt narrative, we unravel the remarkable spirit of children like Josiah who, despite their daily challenges, possess an amazing capacity for joy and happiness. This episode is also a sincere appeal to listeners who might have figured out the remedy for this seemingly mundane but complex task. It’s a peek into a day in the life of a parent of a child with disabilities, an opportunity to glean insights on handling similar challenges, and an invitation to marvel at and draw inspiration from the strength and resilience of these special children. Join us as we traverse the joys, the struggles, the victories, and the constant quest for solutions on this extraordinary path less traveled.

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

Josiah has dealt with GI issues for far too many years.  It’s been an ongoing source of discomfort for him and frustration for us.  It’s extremely difficult to watch someone you love suffer while helpless to provide relief.  That’s how it’s been for longer than I can remember.

Initially we weren’t sure what was causing such pain and aggression.  Since Josiah is unable to tell us how he’s feeling, we’ve been left to try to figure it out by keeping careful data, looking for clues, ruling out possibilities, eliminating certain foods, adding in other foods, introducing new medicines, tweaking medicine doses, adding supplements, removing supplements, increasing liquids, increasing exercise and most definitely increasing prayer!

We’ve visited doctors and specialists.  We added protective clothing to keep Josiah safe from himself.  I’ll probably mention this many more times over the course of this blog but Josiah LIVED in a padded softball helmet with a full face shield for 3 years!!  All to keep him safe during extreme bouts of pain which caused severe aggression. Read more…

Josiah was discharged from the hospital today.  He was frantic and in apparent agony as we raced him to the ER in the wee hours of the morning Friday. Tuesday he began struggling with incontinence (unusual for him), increased thirst, heightened aggression and self injurious behaviors, incessant screaming to the point of making himself hoarse and a bloody left ear from too many punches.

Earlier in the week as things began spiraling downward, I quickly ordered 2 different helmets for him from Amazon.  One is a skaters helmet, heavy and cumbersome, completely padded inside with great ear protection, clearly not meant for the purpose for which I purchased it.

Read more…

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.

Read more…

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.

Read more…