Sunday, January 18, 2015

Shoes: A look at Special Needs Parenting

By Joel Brens

Have you heard the phrase "You don't know a man's journey till you walk a mile in his shoes?" It's a tired, somewhat overused way of expressing that we really don't understand the struggle of others. That being said, in so many cases, it rings so very true. I spent the better part of two years blogging about the ups and downs of parenting a preemie baby in and after the NICU. As much of our journey in the NICU has changed me, our journey beyond it has also been a vast growing and learning experience.

While a majority of us share similar circumstances, specifically a stint in the NICU, the dynamics and circumstances can be vast in comparison. My son's life never hung in the balance, he wasn't diagnosed with ROP or CP, or a great deal of other conditions that can provide steep challenges and adversity for parents. That being said, my son is a special needs child, and the day to day struggle is real.

There are days when I don't give our obstacles a second thought, be it a byproduct of routine or the dozens of daily activities we cycle through without conscious. Then there are days like today where we run evaluations in hopes to find clarity on what we are dealing with. Without choice, it puts are concerns to the forefront of our minds.

I have cried a lot over the first four years of Jayden's life. Sometimes because I am overwhelmed, others because I am overjoyed. Sometimes both.

I am constantly juggling a crisis of conscious regarding my parenting styles. Trying to find a balance between the old school parenting train of thought (discipline, tough love, consistency, enabling, and the like) and understanding that what we are dealing with in regards to sensory issues and behaviors, simply, is not that simple. Without knowing what exactly we are dealing with and more importantly, how to address it, it's like trying to juggle with your eyes closed.

This is not a plea for sympathy, but a testimony to what Gena and I, as well as many other special needs parents are facing day to day.

My shoes may not be polished or perfect, but they fit me just right.