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Down Syndrome Parenting 101

Must–Have Advice for Making Your Life Easier
Natalie Hale
Foreword by Martha Beck

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Sale Price: $16.06
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isbn# 978-1-60613-020-9
6" x 9"
242 pages

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Copyright controlled materials. Cannot be reprinted without permission of the publisher.

From Chapter 5, Honestly, Now

“If I were two-faced, would I be wearing this one?”
–Abraham Lincoln

Honesty Like We Never Knew
Before Jonathan was born, I thought I was an honest woman. A good citizen, the kind of person who’d return the money if a cashier mistakenly gave her too much change. In fact, I had no idea how deep honesty could run. Not until after Jonathan was born.

With his entrance into my life, all polish and veneer was stripped off of any superficiality I still carried with me. This child opened my eyes to a reality I didn’t know existed; and once that vision was opened, I found there was no turning back to blindness. My son’s very existence wouldn’t permit it.

I later learned that I was not alone experiencing this. Our children help strip away any veneer that might have covered our attitudes, perspectives, and general understanding of life. Other parents may be able to plod through various pretenses and posturing; happily, we can no longer do that, if we ever did.

For me, Jonathan’s birth caused a paradigm shift equal to a cosmic quake off the planetary charts. I believe it is the same for most of us. This shift of vision is our private tsunami, our individual hurricane, our intensely personal life-changing earthquake. Standing in the aftermath, after the initial storm has passed, we view the changed landscape with a new vision. So many things that we just didn’t get before, we now understand. We begin to realize that these children are way ahead of us: they already understand things that we don’t, and are here to teach us, even as we teach them.

I thought I was honest; but as time passed, I realized that much of my behavior had been subtly dishonest in that it was out of sync with my inmost core. I had laughed when I wanted to cry, was superficially friendly with people whose values and behavior repelled me, and wasted precious time on useless pursuits. Now I loved and lived with a child who had no veneer.

I believe that our children with Down syndrome have neither the heart nor the capability for dishonesty or pretense. They easily cut through the red tape of life and go directly to truth, and I am convinced that we cannot be parents of a child like this without belonging to the same visionary club as do our children. Our understanding is forever expanded, forever altered. There is no way back to unawareness–fortunately.

A Head Start in Honesty Training
Jonathan’s very existence began working on my honesty, gently poking me through my conscience, even before he was born.

I yearned for children for twelve years before giving up all hope entirely and focusing on a career. Twelve years into the marriage, I embarked on a months-long sabbatical journey in Europe with my husband. A week before returning to the USA, I found myself alone in a London hotel room with a few hours and nothing to do.

I idly flicked on the room’s TV and found a movie to watch. American-made, this film was about a newly divorced mother and her young son; the boy had Down syndrome. The movie followed their struggles for acceptance, their joys, and their eventual success in creating a rich life and a loving new family.

The sight of anyone with cognitive disabilities had always been uncomfortable for me; I never knew how to respond, what to do, how to react. No one in my world of experience had a developmental disability, and I was absolutely clueless as to how to handle the simplest of encounters, much less actually live with a child with a disability. As the movie progressed, I became increasingly uncomfortable with the subject matter. But for some reason. I did not move to switch channels.

I stared at the TV and the mother’s struggles, and the longer the movie went on, the lower my heart sank and the more uncomfortable I became. Finally, my thoughts erupted: “I could never do that!” I remember this thought as being very strong, very determined. It was out of the question for me.

At that very moment, Jonathan as an embryo had already been nestled in my womb for ten days. I had no idea.

He was on his way to rescue me from my off-centered truth. Soon I would no longer be clueless; his very arrival was going to make me an honest woman, dissolve my discomfort, and light up my life.

Scattered throughout this book are many stories of our little Truth Mongers in action. This chapter is simply a pause to drive home the obvious, to shine a spotlight on that verity; our children will bring us back to our own truth, just in case we happen to stray.

Which brings me to the following stories.

You Stand Corrected
Or sit corrected. Or recline, or whatever, but you will indeed be brought into line by your child’s inner polygraph core. My friend Dan, father to ten-year-old Emily, experienced this pinch recently.

“When Emily was born with Down syndrome, I asked myself, ‘What did I do wrong to deserve this? Now, ten years later, I ask myself, ‘What did I do right to deserve this?’ She has taught me powerful lessons. Once, when she was within earshot, I made a remark about an acquaintance that I realized too late was unkind. As soon as the words left my mouth, Emily turned and held my gaze with awareness and a mature look of reprimand that cut right to my core. I was stunned and humbled.”

Bringing Us in Line
These corrections to our honesty radio dials can be moving, even embarrassing; they can also be disarmingly funny.

Sometimes our kids bring us back to where we need to be mentally. Being naturally distracted because we’re constantly multitasking unwittingly modeling the epitome of ADD, we get off track. Not to worry. We can trust our children to help us refocus. Since the dishonesty filter was never installed on their character computers, what they see is what they say.

One evening, I was distracted while Jonathan was trying to tell me something. “Aw, come on!” he said. “Try to be focused, now!” I was caught off guard. “You’re trying to get me to be focused?”

“Yes. It’s my job!”

Our children’s inner solidarity with their own truth gives them an air of confidence and utter relaxation that can sometimes be both maddening and hilarious. When Jonathan was younger and I was teaching him to wipe his nose, he had the gross habit of taking his bare hand and wiping his nose upward. No matter how many times I trained him otherwise, he was persisting in this ridiculous habit. Losing my patience with this, one day I yelled, “Jonathan, do I wipe my nose like this?” and I imitated his nose wipe.

“Nope,” he said. “Just me.”

He’s still keeping me focused. One night recently, Jonathan was talking excitedly on the phone with me. He had discovered new websites where he could download pictures from some of his favorite Disney movies. To him that was a gold mine.

His housemate had been gone for a few days, visiting relatives. As I listened to Jonathan talk about his exciting new websites, I could hear background noise that sounded like the roommate was arriving back home. I interrupted him to ask, “Jonathan, did your roommate just come back?”

An exasperated sigh. “Mom, just focus on the websites.”

Yes, sir!

One evening my friend Eve was chatting with me after a ballroom dance class for teens and adults with Down syndrome. We were admittedly having an extended chick chat when her daughter Lauren intervened. Dance is a cardio workout disguised as total fun, and Lauren had worked up a terrific sweat. But the temperature outside had dropped into the single digits, so she had her winter coat on, ready to leave. She waited patiently for a few minutes and then said dryly, “I’m melting here. Wrap it up, Mom.”

Oddly enough, when a parent hears these types of comments from someone with Down syndrome, there is no tinge of “smart mouth kid.” Why? Because whatever was said was the truth, and delivered without the slightest trace of ill will.

Her Just Desserts
On rare occasions, these corrections are remarkably subtle. For example, my student and friend Blair, now 33, has a laser-like ability to assess the hearts of other humans—-and when necessary, to teach them. Blair’s high school principal never could get her students’ names right. She habitually addressed them by the wrong name, and of course this did not sit well with the students, who rightly felt devalued. Blair observed this; apparently it rankled his sense of respect for others, and he decided to do something about it. So, let’s say the principal’s name was Mary. One day she greeted him with, “Hi, how are you?” Blair answered deliberately. “I’m fine, Alice; how are you?” The story became famous in the school.

Truth Is Cool
My daughter Rebecca’s friends, most in their mid-twenties, think Jonathan totally rocks. Why? Because he’s funny, he’s real, and he likes them. They in turn love his unique expressions, his humor, his insight, the affectionate nicknames he invents for those dear to him (which is all the good people in the world), and, of course, because he calls things as he sees them.

Because we typical humans are socially hidebound by politically correct behavior, and don’t feel we have the freedom to say what we see, we feel an almost covert admiration for those who simply open their mouths and speak the truth.

I suggest that most humans on the planet need to have at least one soul with Down syndrome revolving in the sphere of their life. This will ensure a regular encounter with truth, humor, and humility.

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