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Wheeling Out of Denial

Wheeling Out of  Denial

Denial. It’s something I wrestle with. As a parent of a child with special needs, it’s always a factor. It ebbs and flows, coming in and going out like the tidal waters of the ocean.

One of my major denials dealt with getting a wheelchair for my son Z.

Z has cerebral palsy (CP), a disorder affecting his muscle tone and movement. CP affects people differently, but for Z, it affects him head to toe, causing stiff muscle tone, making basic movements difficult and sometimes painful. He is also dynamic, meaning he can break out of his tone when he’s relaxed.

I’d rather not mention the label because he’s a person first and foremost and it’s how he should be known. Too often people overlook this basic component of humanity to focus on “what’s wrong with him”.

Do we “typical” folk introduce ourselves followed by our labels or diagnoses?  What’s “wrong” with ourselves? In my worldview, every one of us has some sort of disability; some are simply more visible than others.

But I digress.

When Z turned 2, therapists recommended getting him a pediatric wheelchair. We blindly went forward ordering one, only to discover it came with a $1,500 insurance copay, which all had to be paid up front.

Since we were young, broke parents, it wasn’t going to happen. My first subconscious thought must have been thankfulness; thankful my denial could set in for a little bit longer.

Denial catches up with you. Truth has a nasty way of punching you, kicking you and throwing daggers at your heart.

It was my fear of preschool, which led me to face my denial once again. Z was quickly approaching three-years-old and would start a preschool program in a few weeks. With his current condition and abilities, it was very apparent he would need a wheelchair for proper school participation. I was left with the insurance option, which we had no money for, or … well, Craigslist, of course.

We found a decent wheelchair for a fraction of the copay price. It was the old chair of a teenage girl. The base bars were bright purple and the girl’s name was stitched on the back. We ripped out the stitching, a medical equipment specialist got it adjusted for Z’s smaller size – my wife took my camo duct tape and wrapped the purple bars making it a manlier chair.

Z took his inaugural ride to church, then again when we toured the preschool. Surprisingly, I became more accustomed to the idea of Z in a wheelchair and even felt more at ease he’d be at the same height when facing those tall, rambunctious, touchy kids in the classroom.

Was my wheelchair denial faced and overcome? Seeing him sit up straight, wheel around effortlessly, and enjoy the ride wheeled me out of denial in this area.

For the time being.

Denial is funny, ebbing and flowing, one day here, next day gone, only to return in another area. It’s the life of the parent raising a child with special needs. I’m not opposed to the chair, hate it, or feel animosity against it. It’s simply denial. I’d always hoped he would eventually be able to walk; one miraculous day, he’d stand and fend for himself, even if a bit clumsy.

I was in denial of the fact he would ever need a wheelchair.

In the years since, Z is rocking his third manual wheelchair and loves cruising independently in his power chair. His power chair is by far his favorite; he calls it his car and loves pretending to drive to other states or out to dinner. It’s his in-house and outside cruiser where he can enjoy some independence.

While he continues working with traditional and alternative therapies, we always hold the hope someday, through technology or medical and scientific advancements, Z might be able to walk and stand by himself.

One day. Maybe. Hopefully.

But if the day doesn’t come, I’ve moved beyond denial to accepting and embracing the wheelchair.

Denial will always find a new area in which to harbor.

My wife and I for years have been denying the fact we need to get a fully accessible vehicle with wheelchair lift and tie downs. With Z’s developing independence in his power chair, we are now facing the truth—we need a vehicle he can get into so he can take his power chair everywhere we go.

If only we could deny how crazy expensive those are!

 

Editor’s Note:  Did you know that denial is an important survival skill for coping with the challenges you may be facing?  For more information on the stages of adaptation when you have a child with a disability, visit http://www.parentcompanion.org/article/the-4-stages-of-adaptation-stage-1-surviving   This was developed in partnership with Parent to Parent of Texas. 

Let’s keep the conversation going?  What’s your experience with the “ebb and flow” of denial?  Share your thoughts with us at: p2p-co@yahoogroups.com

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Nathan resides in Arvada, CO with his wife Renee, his 9-year-old musically-gifted son Zak, his 4-year-old princess Madison, a rescue mutt named Ludwig and an outdoor cat called Shredder. The birth of Zak and his CP diagnosis changed their lives for the better, even though it was through many struggles and trials. Their family felt complete when they adopted Madison from medical foster care in early 2013. Nathan serves on the board of two organizations: Parent to Parent of Colorado and the Colorado Foundation for Conductive Education. In 2010, Nathan and Renee created a website to blog, post videos and connect with other families raising children with special needs. Nathan and Renee work from home, enjoy family time and love date nights at those instructed-paint-and-drink-wine-places.
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