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Outside the Box Parenting for Outside the Box Kids

Alethea Mshar
Special needs mom and Blogger
04/06/18  8:48 AM PST
OT Awareness Month

Outside the Box Parenting for Outside the Box Kids

We have talking belly buttons at our house, specifically my son Ben’s. Yes, it’s as absurd as it sounds, but life around here wasn’t cut out by any cookie cutters.

Autism comes first in so many ways in his life. Ben’s whole life is an outside the box experience.

Our youngest son, Ben was born with Down syndrome, and hit hard with multiple medical issues, including the rare disease, Hirschsprung’s Disease. He also survived leukemia, and relatively late in life, at the age of nine, got a second developmental diagnosis of autism. What we hadn’t realized before we had the word for it, was just how much autism was driving the bus. You see, Down syndrome and the medical problems came first chronologically, but autism comes first in so many ways in his life. Ben’s whole life is an outside the box experience.

Outside the Box Parenting Makes Daily Medical Procedures Bearable

As a result of Ben’s Hirschsprung’s and a separate issue with urinary incontinence, Ben has  MACE (Malone Antegrade Continence Enema) and Mitrofanoff stomas in his belly button. On a daily basis he needs to have his Mitrofanoff stoma catheterized at least two or three times and his MACE flushed once. Because of his developmental disabilities, he simply doesn’t understand the need for these daily procedures nor the improvement to his quality of life that it gives him, he just knows that it’s not enjoyable.

So he fights.

We have tried just using, a no-nonsense, logical approach to the situation and making him do it, but he fights every time, no matter how many times we go through it. After awhile, we wondered if he would tolerate it better if we got creative. Even though I tend to be pretty adaptive in my parenting style, my husband leads the way with Ben because of his innate creativity. That’s where the talking belly button comes in. A talking belly button can interact when it needs to be catheterized. A talking belly button can make an otherwise resistant child fall to the floor with the giggles when it’s time to do something he hates. And sometimes we even give the belly button a face.

outside the box parenting

We weren’t given any guide books or manuals to figure this out. But what we know is that our son with autism and the rest of the family thrives when we can approach situations with novelty and fun.

Our parenting often has a bit of a unique flavor to it. We weren’t given any guide books or manuals to figure this out. But what we know is that our son with autism and the rest of the family thrives when we can approach situations with novelty and fun. It diverges from the traditional parenting approach of what mom and day says goes, and it keeps us on our toes. We’re always trying to find ways to be proactive about caring for Ben’s unique combination of developmental and medical needs with a positive approach. But for those battles that we have to choose (and we very much choose our battles), taking as much of the fight out of them as possible makes everyday life better for us all.

To a casual observer, our nontraditional approach might very much look absurd, but if there’s anything that parenting with autism has taught me, it is to embrace the absurd and ditch the box in favor of whatever happens to work today.

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