It’s Your Paradigm That Counts.

October is national Down syndrome awareness month. My son with the extra 21st chomosome taught me about the word “paradigm.” My son with special needs. The one with global developmental delays. The non-verbal one. The one who’s IQ is labeled by psychologists as “not testable.”  The one called “oblivious” by his kindergarten teacher – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle.

My Webster’s dictionary (yes, I’m ‘old school’) defines the word “paradigm” as “an outstandingly clear or typical example.” Dictionary.com defines it as “an example serving as a model or pattern.”

It tears me up to admit this, but when Hayden was born, I had called my parents to share the good news. During the conversation, I told my dad, among other things, that his first grandson would never pitch for the Yankees or play linebacker for the Trojans at USC. I was focused on the label of Down syndrome. I thought the easiest way for me to learn about Down syndrome (in order to teach our family and friends about Hayden) was to compare and contrast to “typical.” And that’s what I did. I was so wrong.

Until at 4 weeks of age, when Hayden underwent a PDA ligation, or heart surgery to us liberal arts majors. Hayden was braver than I was, and certainly tougher than anyone I’d ever met during his recovery. His perseverence was breathtaking. And he came through with shining colors. I began to see my son. He was Hayden.

He wasn’t defined by a label. He was so much more. At some point, we left behind the extra chromosome, and dealt with the reality of Hayden’s daily routine. It was what it was. Just as we all are, he is who he is.

Around that time, we learned the life-changing philosophy. From Hayden. Not a life coach or late-night pitch man. His life, and ours, is defined to those around us by our life view. And we had a choice.

Strengths-based vs. Deficit-based

We soon found that Hayden (and by extension, our family, each member of it, and, indeed, our whole life) could be described in one of two ways. Only two. It’s pretty simple. Strengths-based, or deficit-based. 

Because Hayden is largely non-verbal, it is left primarily to us (his parents) to describe him, his interests and activities. Early on, we did so to Community Centered Boards, doctors, therapists, family members and friends. We found that Hayden can be described in terms of things he cannot do (deficit-based), or his life can be described in terms of things he can do (strengths-based).

We found that embracing the strengths-based view made us feel as if we were being more true to Hayden. This was the kid who was fighting with grace and courage through surgeries, seizures, infections and every other medical malady one can imagine. He was loving and trusting his novice parents to make the correct decisions on his behalf. It was the least we could do to return the favor.

So let’s try that first paragraph again.

October is national Down syndrome awareness month. My son, Hayden, taught me about the word “paradigm.” My son with the great sense of humor. The one that loves music. The one that uses sign language, and loves to watch Signing Time. The one that loves to go to the beach to admire the ocean as it sparkles under the sun – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle. He taught me to be positive.

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10 Comments on “It’s Your Paradigm That Counts.”

  1. Geoff Paddock Says:

    Very well spoken, Jeff. I have a cousin in Montrose that has Jacob, and at the age of 3 is finally learning to walk. I got to meet Jake a year ago and instantly fell in love with the little guy. He will never be normal by the worlds standards, but by his own, he will be a bundle of joy. His first steps were treated with great excitement for all of his family. I get to read of Jake’s accomplishments and I burst with pride for the little guy. I wish I lived closer so I could be his biggest and baddest friend!!! Thanks Jeff.

  2. Erick Says:

    There are many different types of curves out there, but two of the most common are mean and average. By themselves they say something, but to identify someone needing to be within them is where our ignorance as humans becomes evident. I doubt if you two remember sharing with me of another parent who was praying for healing of their baby who had a special need. You pointed out the baby was not sick, so what was God supposed to heal? That was wisdom.

    We are all unique and fall totally short of what Christ originally intended, but what we are is now God’s gift to mankind.

    In reality there are no “normal”, or average beings out their — Praise God for making us all totally different to compliment Him.


  3. OK – so this made me cry. You put so eloquently into words a transformation in us all that cannot be explained. You are a good man, Jeff. Thanks for sharing! I think I will attach this to the work Dr. Skotko is doing.

  4. Nektar Says:

    I am smitten by your honesty and honored to have read your blog. My Ruby shares your Hayden’s special gift and that is of opening up our eyes to the beauty that lies around us…..thanks so much for sharing!! 🙂

  5. Tess Worrell Says:

    Beautiful! Wish everyone would read this.

  6. Beth O Says:

    It’s helped me to think of my daughter in terms of all that she can do: she follows her own developmental curve and no one else’s. When she does something new, it feels just as miraculous as it would have at an earlier time.


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