“Some People Even Take Them Home”: A Disabled Dad, a Down Syndrome Son, and Our Journey to Acceptance

349 Pages·2014·1.46 MB·English

by  Tim J McGuire

“Some People Even Take
Them Home”
A disabled dad, a Down syndrome son,
and our journey to acceptance
Tim J. McGuire
Tim J McGuire
Scottsdale
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“Some People Even Take Them Home” Copyright © 2014 by
Tim J McGuire.
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To Jean, my inspiring partner and collaborator in life,
parenthood and on this book
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Contents
• Dedication
• Introduction
• 1. Tim's beginning
• 2. Jason's beginning
• 3. Tim’s early years
• 4. Jason’s early years
• 5. Tim’s coming of age
• 6. Jason’s coming of age
• 7. The adult Tim
• 8. The adult Jason
• 9. Tim’s turn to cry
• Author's note and acknowledgments
• Tim J McGuire
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Introduction
I stared unbelieving at the list of 25 different topics the
Aquinas College sophomore English instructor had offered
from which we could choose to write five papers during the
semester. It was 1968 and I was laser-focused on one of the
topics, which read, “You’ve just been told you have a
disabled child, describe the sadness and disappointment.”
At the time I was unbelievably defiant, if not in denial, about
my own physical disability. I was born in 1949 with badly
crippled limbs. The diagnosis was Arthrogryposis Multiplex
Congenita. Despite my protruding butt, my profound limp and
twisted hand I spent most of my adolescence trying to prove
to everyone that I was just like everybody else. In my college
years my quest for normal was so energetic I darned near
killed myself with ill-advised reckless behavior.
So, the heat rose off that theme paper when I argued that
having a disabled child wasn’t a problem at all–as long as the
child had his mind. If he had all his mental abilities he would
be a blessing, not a disappointment. I remember I got an “A”
on that paper, but the instructor’s comments made it clear he
was seriously taken aback by my vehemence.
Ten years later, I got the official news that our first son, our
second child, was not like all the other kids. That sophomore
English paper was one of the first things I thought about when
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the aging doctor, with a bedside manner out of The Exorcist,
told me and my wife Jean that Jason was “Mongoloid or what
they now call Down syndrome.”
He then uttered the words that have hovered over all of our
decisions, disappointments and triumphs: “Some people even
take them home.”
It is impossible to imagine not taking Jason home and not
experiencing the happiness, wisdom, frustration and tenacity
he has brought us. It is incomprehensible to me that Jean and
I and our other two children, Tracy and Jeff, would have
missed the mystery of Jason—that he is 35 and 5 at the same
time. At his essence, Jason is simultaneously a little boy, with
all the fears and emotional immaturity of a child, and the
smart-alec, somewhat experienced adult who has watched
countless movies and TV shows and poignantly wishes he
had somebody with whom to share his life.
Jason has no real cognitive skills but his incredible savvy
drives us to laughter and a deeper family sharing. Clearly, he
is the emotional glue for our family, but the journey to
acceptance and appreciation of our experience was
unpredictable and sometimes ragged.
Shortly after the devastating words from the doctor we
promised that we would take Jason home unless and until he
jeopardized our marriage or our family. He never did because
his good nature and our family’s sense of adventure and
irreverence helped us survive the madness of such things as
three years of toilet training and two years of incessant
running and countless other challenges and frustrations.
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We all had our roles. Jean was always the clever problem
solver. Tracy, the third parent, was destined to be a Special
Ed teacher because caring for a Down syndrome brother
seemed so natural to her. Jason’s younger brother, Jeff, from
the time they stole cookies from the cupboard together, was
his close buddy. As the disciplinarian I could usually control
Jason with a stern look and then moments later we would fall
over in laughter from “jerking each other’s chains.”
One of the few real tensions between Jean and me, and the
great ground for on-going compromise, was that my own
battle with disabilities had made me tough and independent
with a fairly large chip on my shoulder. I believe the way you
deal with a disability is to dig deep into your reservoir of
strength and rise above it. No coddling allowed.
My parents were coached never to pick me up when I fell for
fear of spoiling me. I spent two weeks practically every
summer in the hospital and only saw my Mother every other
day. Jean has always been low-key about it, but she made it
clear monkeys would write Shakespeare before Jason spent a
night alone in a hospital. Fortunately, he wasn’t in the
hospital often.
By watching and helping Jason through the years I
continually gained more perspective on my own physical
condition until one day, when I was 43, I ditched years of
defiance and denial and I finally checked the disabled box on
a census form. It was time to admit to myself and to others
that my disability had shaped me, and it had shaped my
relationship with my physically disabled son.
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This book is about a family, especially a father and a son,
coping with two disabilities. It is a story full of laughter and
love, of insights and lessons about life and disabilities; a story
that demonstrates the importance of tackling one challenge at
a time. It is also a story of a child shaping his father as much
as the father shapes his son.
It is also a story that took a dramatic, devastating turn in
mid-2014, a turn that redefined challenge for our family and
offers a new set of lessons as we create the next chapters of
our lives.
One person who has not read this story, and never will, is
Jason. I deeply regret that. When he and I discussed it I am
not sure how much he grasped and his only real reaction was
that the book idea “gives me goose bumps.”
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Tim's beginning
My tiny wrists were twisted like useless little clubs. My feet
were laid up against the inside of my newborn legs. The right
side was clearly more damaged than the left. My skinny right
leg stuck out like a stiff stick. It looked as if it would never
bend. The rigid right elbow would never throw a curveball.
Jim McGuire, the short, tough-guy World War II veteran, had
been in the waiting room for eight hours anticipating the
moment when the doctor would come out to tell him all that
“healthy-baby, mother-doing- fine” stuff every dad is anxious
to hear. The kind, small-town doctor, Frederick Balz, did rush
out immediately after the birth. But he couldn’t hide his
sorrow. He had delivered a lot of babies in this peaceful
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