Everyday Heroes
Patricia Plunkett
“Everyday Hero” of the Month – March 2010
My friend, my confidante, my teacher, my son’s hero, my hero
In the summer of 1998, I went to my
orientation seminar at the University of Connecticut. I was sitting in a huge
lecture hall filling out paperwork, selecting a major. I knew I was going to be
a teacher. But, even up to the summer before I went to college, I wasn’t sure
what type of teacher I would be.
I read
through the plans of study for Elementary Education-Special Education, Science,
Social Studies, and Foreign Language. I thought it was fascinating; I would
check a box and write my information on the document and my selection would be
made, my future set.
Science
was a high demand field. But I was awful at science.
Foreign
Language was appealing but as I didn’t speak a foreign language, even after
four years of high school Italian, it would be way too difficult.
I
narrowed it down. Between social studies and Elementary Education/Special Education.
The Elementary Ed program was combined with the Special Education.
But I
really, really liked history. It was like a story.
I went
back and forth. And finally ended up selecting social studies.
It was a decision
I wouldn’t regret until ten years later when I learned my son had Down
syndrome.
Never before had
I wished that I’d paid closer attention in my special education courses….to the
details….every last detail.
The legislation. I was always a
great student in college. I don’t take pride in much I do. But I was a great
student. I formed great relationships with professors. I had a 4.0 in grad
school. I was a dean’s list student.
Certain topics in
my classes, however, confounded me.
What was the difference between
fine motor and gross motor? What was a sensory experience? I always thought it
sounded like it had to do with the nose. What the heck was vestibular motion?
Being a mother is
something more important than any career, any profession. In becoming a mother,
one becomes a teacher to the most important student in the entire
world—your child.
All those buzz
words that would, at one time, confound me became my new vernacular.
I threw myself
head first into Rory’s services. I had an agency out. They met my son and drafted
an Individualized Family Service Program (IFSP).
It was two women
who came and sat on my rug. They removed their shoes and had a checklist of
questions about Rory.
They seemed really ‘professional.’
They ruined that thought when they opened their mouths.
“Okay,
we are going to draft and IFSP for Rory.” At the time I didn’t know what an
IFSP was, nor did they explain it but being a teacher, I recognized that it
sounded a lot like IEP. “We are going to draft Rory’s goals with the mind frame
that Rory will be delayed in everything he does because of his diagnosis. So
we’ll give him an extra six months for some skills.”
Wow, how sweet of
them! Giving my little man an extra six months? They encouraged us to have him
lie on his back in a boppy pillow to prevent his legs from adducting out. They
wanted him visually tracking while lying down. They wrote his goals
accordingly; in a way where Rory was not only NOT challenged but in a way that
his disability was highlighted, where they imposed limitations upon him because
of the nature of his diagnosis.
I thanked them,
accepted the paperwork, waved as they left, and promptly began the search for
better providers for my son.
The next woman
who came out…. she was and will forever be my angel.
My friend, my
confidante, my teacher, my son’s hero, my hero.
Her name was/is
Pat.
Pat spoke to me like I was a professional therapist. But I wasn’t. And
she didn’t care. From the day she came out to meet Rory, she trained me. She
loved Rory but she didn’t simply want to cuddle him. She wanted to help him
progress. She wanted to push him, as
well as challenge him. She didn’t adhere to ‘he will be delayed because he has
Down syndrome.’ She taught me to challenge that. When Pat wrote her goals, she
did so following a typical child’s development. She said we would give him
every opportunity, have the expectation he could do it, and reassess in the
event he could not.
She didn’t have a
limiting self-fulfilling prophecy for Rory. She saw his potential. His capabilities.
More importantly, she saw them as being limitless. And I love her for that.
One of my best
friends used to say, you learn to drive and they give you a manual, you learn a
trade and they send you to school, and yet the most important job, being a
parent comes with no manual. You learn it all on your own. Being the parent of
a child with special needs, you are blessed in many regards; one of them being…you get that manual my friend spoke
of. All those questions on feedings and nap schedules and fussy babies; when to
start solids and when babies should begin which skill….we parents of children
with special needs get all that information.
Almost too much
information.
I learned so much
from Pat. Pat was and forever will be my ‘manual’.
I used to believe
babies were so fragile, so delicate they were to be held, rocked gently, and
floor play would come later, perhaps toddler time. When you burped a baby I
thought you were to rub gentle circles, not firm pats.
I couldn’t
get my baby to nap. I would walk around with Rory in my arms… rocking him until
he fell asleep.
Doug and I were
eating dinner one night and Rory’s arms kept flailing out as he was crying. I
called my mother, crying that the baby had a neurological disorder, that his
arms were flailing.
My mom came right
over, saw the baby, rolled her eyes and said, ‘that baby is tired.’
But it was Pat
that taught me how to put my baby to sleep.
Rory liked being pat on the back
with firm but gentle pressure.
I learned how to
put my baby to sleep; it blew my mind.
I wonder if, when, or how I would have learned to nap my son without Pat.
She taught me
that babies are stronger, more capable beings than most people (new mothers and
everyone) give them credit for.
From the moment
she came out to the house, she placed him on the floor on his stomach. She spoke
to me about the importance of tummy time to help Rory develop his core.
I learned Rory
could bounce on a Pilate’s ball when all
I ever previously saw Pilate’s
balls used for was crunches and ab work.
She held him in a
sitting position so he was required to work on maintaining head control.
And I realized,
although fragile, babies were not ‘so fragile.’ I realized it was called early
intervention for a reason. We were intervening to provide Rory those extra
supports. We couldn’t wait for him to crawl or walk. We had to give him the
skill base to build off of so he would be able to do those things. Rory spent
so much time on his tummy; he enjoyed it, looked forward to it. He didn’t cry or fuss. Soon he was
lifting his head while on his tummy, reaching for toys.
In fact, I put
our family on a schedule. It organized me. Gave me purpose. My husband is also
a teacher. He would design his weekly plans and I took to designing lesson
plans for our son.
The course of our
day was and is dedicated to Rory’s therapy. I took to recording his therapy
sessions and would replay them so Doug and I could watch it as a family and
most accurately implement the weekly therapy goals.
We learned two
family members worked better than one. When you had two people it was easier to
distract Rory from the effort he was exerting, have him reach while in
quadraped.
The living room
floor became our school. We converted the room into Rory’s PT (or Play Time) area,
as my husband called it. My days revolved around certain skill sets. Every
moment was a teaching moment. We came to not think of it as work but as play.
Pat taught me the
fancy toys, the expensive toys you find at all those specialty baby stores and
toy stores…more often than not are gimmicky. Yes they are super colorful but
they aren’t the primary colors. They have extra loops and extra latches and everything
extra. And those stores they sell you devices: Walkers, standers, play gyms.
When really simplest is the best. The floor is the best play gym, we learned.
Pat is and will
forever be the woman who shaped me into an advocate, a dedicated mother not
afraid to fight for her child, and taught me that it would be all right. And
you know what? Pat was right!
Submitted by: Christina DeGennaro
“Everyday Heroes” written by Corey Barker/Anita Cox/Joan
Grant
Performed by Cash Creek (Myohana
Music/Corey Lee Publishing/AC Songbird publishing)
“Everyday Heroes” written by Corey Barker / Anita Cox / Joan Grant
Performed by Cash Creek (Myohana Music / Corey Lee Publishing / AC Songbird publishing)
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