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Life with a Superhero

Raising Michael Who Has Down Syndrome

Kathryn U. Hulings

Publication Year: 2013

Over twenty years ago, in a small Israeli town, a desperate mother told a remarkable lie. She told her friends and family that her newborn child had died. That lie became the catalyst for the unfolding truth of the adoption of that same baby—Michael —who is, in fact, very much alive and now twenty-two years old. He also has Down syndrome. When Kathryn Hulings adopted Michael as an infant, she could not have known that he would save her life when she became gravely ill and was left forever physically compromised. Her story delights in how Michael’s life and hers, while both marked by difference and challenge, are forever intertwined in celebration and laughter. With candor and a sense of humor, Life With a Superhero wraps itself around the raucous joy of Michael’s existence with his four older siblings who play hard and love big; how Kathryn and her husband, Jim, utilize unconventional techniques in raising kids; the romance between Michael and his fiancée, Casey; the power of dance in Michael's life as an equalizing and enthralling force; the staggering potential and creativity of those who are differently-abled; and the mind-blowing politics of how Kathryn navigated school systems and societal attitudes that at times fought to keep Michael excluded from the lives of kids deemed “normal.” No other books about the parenting experience outline what to do when, say, a child runs across the roof of a tri-level house pretending he can fly, or shows up in a 7th grade social studies class dressed like Spiderman, or calls 911 when his girlfriend breaks his heart. But, as Michael’s mom, Kathryn has been trying to figure how to be a mother in just such circumstances—sometimes with success, sometimes with dismal failure—for over two decades.

Published by: University of North Texas Press

Series: Mayborn Literary Nonfiction Series


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pp. 1-1

Title Page, Copyright

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pp. 2-7


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pp. vii-viii

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Chapter 1. Unwrapping

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pp. 1-16

Michael came wrapped in layers, too many for a pleasant spring day. Even indoors, a small knitted cap was secured over his ears with yarn tied in a sloppy bow underneath his chin, brushing up against a matching sweater buttoned high on his neck. There was a small bead of sweat on his brow, but he seemed parched; ...

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Chapter 2. Crawling

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pp. 17-32

I’ve known for a long time that my family plays hard. There’s no changing that. Still, their exploits have been self-limiting. They have been slapped by the universe enough to figure out when to back off, when to call it a day, and when, maybe, to be a little afraid. ...

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Chapter 3. Speaking

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pp. 33-40

In our family therapeutic model, I carried on with my specialty— speech. As the primary parent at home, it made sense; I talked to and with my children all day. It was a natural fit. I just talked and read and sang with Michael a bit more. During our regular check-ins with speech therapists, we focused on what we could replicate at home. ...

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Chapter 4. Running

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pp. 41-64

Before it happened, the day was bucolic. I stood on the dewy September lawn in back of the synagogue drinking cream soda and eating a bagel shmeared with cream cheese. Michael, who was three years old, was sandwiched between Jim and me. Jim was in a neck brace, still recovering from an accident. ...

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Chapter 5. Swimming

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pp. 65-90

There is a certain look that can be passed from one mother to another; it is a singular look, and it is saved for specific moments. It is not a pleasant look. It is more like a sneer of contempt. A scoff. The upper lip slightly curls, and teeth are not quite bared—still, the possibility is real that fangs may appear—the eyes redden and then close into razor-sharp slits, ...

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Chapter 6. Playing

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pp. 91-108

The past few years, I have started to type a fan letter, but I always end up hitting delete, even before I print it out to see how it reads on paper, to see if maybe my words look less creepy on an 8 × 10 sheet graced by sunlight than under the starkness of office lights and the glare of my computer screen. ...

Chapter 7. Believing

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pp. 109-112

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Chapter 8. Learning

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pp. 113-132

I wrote and hand delivered a letter to Michael’s elementary school principal after he brought home a project on Native Americans, complete with a Crayola picture of a chief in feathers and war paint, and a story scratched out in his emerging block print. The project was intended to provide a sample of his work, proof of progress or not, and a prompt for discussion at his upcoming Individual Education Plan (IEP). ...

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Chapter 9. Imagining

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pp. 133-138

I have a bone to pick with what the mighty and powerful at Walt Disney Studios have allowed, specifically the machinations of the darling pixies who toil away so diligently at their hugely successful offshoot, Pixar. You see, they complicated my parenting skills, especially with Michael. ...

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Chapter 10. Flying

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pp. 139-164

For a moment, suspended over an expanse of nothingness, their collective breath only a speckle in the span of totality, my family flew. Of course, I wasn’t with them; I am permanently grounded by my abdomen full of internal adhesions. So, when my family took to the skies without me on a clear summer day in Southern Colorado, it was meant to be a secret. ...

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Chapter 11. Dancing

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pp. 165-186

I know that it is not appropriate to repeatedly scream out in agony when one of my children is performing in a sold-out, standing-room-only, high-school talent show. It could easily be misinterpreted as rude. Or as child abuse. I know this. That, however, doesn’t mean I haven’t done something like that. ...

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Chapter 12. Waiting

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pp. 187-218

As Michael approached his fifteenth birthday, he became energized by the upcoming promise of gifts and cake and maybe a party. His birthday is in February. In November, on a Monday, during dinner time conversation, Michael asked Jim how long it was until his birthday. ...

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Chapter 13. Wondering

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pp. 219-234

On the evening of March 20, 2011, the stage in the Timberline Church auditorium was graced with human beings who carry with them a parade of diagnoses. There—the girl whose arm hung stiffly, in a permanent right angle at her side. There—the boy whose head stuck out far beyond his neck. ...

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Chapter 14. Wrapping

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pp. 235-240

Sometimes, from my upstairs bedroom, at any given time of day, I can still hear Michael talking to himself. I remember how I used to run downstairs and glue my ear to his closed door, worried that something was terribly wrong with this scenario. ...

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Chapter 15. Progressing

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pp. 241-246

About two years ago, if anyone had told us that Michael would soon be gainfully employed and working ten hours a week, with little to no supervision, Jim and I would have appeared decidedly doubtful. I would have bitten my lip and cast my eyes downward, the way I do when I am about to cry ...

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Chapter 16. Thanking

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pp. 247-248

I gladly offer my heartfelt thanks to the following people, without whom I would not have been able to complete this book: my adored husband, Jim Hulings, who has the patience of Job, and my beloved children and their significant others, Nathan, Sean, Joedy & Dave, Edie & Jeff, Michael & Casey—the nine of them are my life and my muses; ...


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pp. 249-258

Source Notes

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pp. 259-260

E-ISBN-13: 9781574415377
Print-ISBN-13: 9781574415247

Page Count: 288
Illustrations: 25 b&w illus.
Publication Year: 2013

Series Title: Mayborn Literary Nonfiction Series
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OCLC Number: 852899343
MUSE Marc Record: Download for Life with a Superhero

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Subject Headings

  • Hulings, Kathryn U.
  • Hulings, Michael.
  • Down syndrome -- Patients -- Colorado -- Fort Collins -- Biography.
  • Down syndrome -- Patients -- Colorado -- Fort Collins -- Family relationships.
  • Children with mental disabilities -- Colorado -- Fort Collins -- Biography.
  • 0 -- Colorado -- Fort Collins -- Biography.
  • Adopted children -- Colorado -- Fort Collins -- Biography.
  • Mothers of children with disabilities -- Colorado -- Fort Collins -- Biography.
  • Adoptive parents -- Colorado -- Fort Collins -- Biography.
  • Mothers and sons -- Colorado -- Fort Collins.
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