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)
More Everyday Heroes
- Honoring the Legendary Dick Hoyt [2]
- Eunice Kennedy Shriver [3]
- Real Life with Eustacia Cutler [4]
- Judith Bluestone [5]
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