Main content

Alert message

Spring 2019

By Heather Withrow, Parent

Abstract: In this article, a parent describes her life journey, her experience being the mother of a child who is DeafBlind, and her studies in the field of education and orientation and mobility.

Keywords: orientation and mobility, O&M, Certified Orientation and Mobility Specialist, COMS, Deaf, DeafBlind, DB, family, parent, movement, intervener, Texas Tech University, TTU, tactile skill, journey

I’m not yet a Certified Orientation and Mobility Specialist (COMS) as I’m halfway through my required coursework at Texas Tech University. I may not yet be a COMS but the “OM” I currently operate under is “Mom”!

It’s remarkable how, when I look back in time, I can see the chain of events that led me to where I am now. I also remember the younger me wondering what my future held for me. In college, I was into art, traveling, school organizations and playing sports. If someone had told me this back then that twenty years later I would be studying for a M.Ed. in Special Education and focusing on orientation and mobility, I would’ve enjoyed the amusing conversation and written it off as pure entertainment. This is what I am currently studying through Texas Tech University. I’m planning on graduating with my M.Ed. in December 2019. I will be picking up my academic certificate in DeafBlindness along the way, in December 2018.

I graduated from Gallaudet University in 1999 with a bachelor’s degree in Graphic Design. I spent my first year traveling as a recruiter for Gallaudet and meeting Deaf and hard of hearing high school students and their family members. After that, I coached volleyball and track and field, did graphic design and illustration contract work, and taught high school art classes to Deaf students. I enjoyed my days teaching art, especially watercolor, acrylics, oil painting, introducing the elements of art and principles of design. One of my favorite units to teach was perspective drawing and other ways to create the illusion of distance in art.

On the sports side of things, I participated in the Deaflympic Games three times as a track and field athlete, with the exception of also playing volleyball during the 1997 Games in Copenhagen, Denmark. I threw the hammer and discus in Rome, Italy the summer of 2001 and again in Melbourne, Australia in 2005 which also was three months after I had my first son, Skyler. I brought some “heavy necklaces” and memories home following each Deaflympic trip.

My interest in body awareness, positioning, kinetics, appreciating processes and spatial information, vectors and distances clearly connected with my appreciation for sports, coaching and my lifelong love for art. These were the dots that seemed to line up, but the dot that certainly set my trajectory toward O&M did not happen until 2010.

In July 2010, my husband and I welcomed our third child, Orion Theodore Withrow. We knew during our pregnancy that Orion was blind and we had reason to believe that Orion would be deaf as well. His older brother Skyler was Deaf. This was the beginning of my trip down the rabbit hole learning anything DeafBlind. Sure enough, at birth it was confirmed Orion had bilateral severe complex microphthalmia and was profoundly deaf, meaning he is DeafBlind. We were fast at work figuring out how to deliver tactile information to him on Day One of his life. Orion’s first touch cue was used within hours of birth. It was “MILK”, where we gently squeezed Orion’s tiny forearm three times.

Like any parent, I was head over heels for all my children. Well, most of the time! When it came to Orion’s particular needs, my passion expanded to learning how DeafBlind could have experiences, meaningful learning opportunities and develop communication skills. My husband, Thomas, and I wondered how Orion was going to get from being where he was as a DeafBlind baby with closed fists at shoulder level to a tactile-signing DeafBlind adult. This topic was and still is a source of energy and wonderment for me paired with my love for sharing cool information. Several years later when parents and professionals found Orion’s story through my blog and started to contact me with DeafBlind-related questions, asking for resources or just having conversations about DeafBlind kids, I realized I would love to actually work with DeafBlind children.

How would I get started? I was on the outside of a figurative double dutch team, looking at the two ropes whipping around one by one and not really paying attention to the timing of when I should step in. The leap I finally took was thanks to an opportunity that disappeared as soon as it appeared. I was poised to start a temporary, semester-long job in January of 2017, but factors unrelated to me closed that door. This revealed a new open door, and beyond it were fresh expanses of time not yet tied up to think and act on what I ought to do next. That late winter and spring, I visited legislators’ offices with friends and corresponded to support legislation for DeafBlind adults to receive support service provider (SSP) services in Texas. At the same time, I finally identified that orientation and mobility fit my interests well and I filled out my Texas Tech University (TTU) graduate program application! I coached my fourth track and field season at Texas School for the Deaf before hanging up my coaching cap so I could focus on my studies. I took my first TTU online course in June 2017.

What I’ve learned from my TTU classes so far have been fascinating and revealing. It is as if I found the Wizard of “Ohthatswhy” behind the curtains of development! I’m going through an amazing volume of information with a sieve. I’m able to consider, save, try out some new-to-me O&M skills and strategies with Orion. A human guide skill I tried with Orion was to step down a single step with him. I used the human guide technique for descending stairs. I stepped down and Orion stepped down without any issues. I’d never done that with him before and for it to work on the first try blew me away. It was so natural and seemed simple. Orion could feel me descend and he followed.

(Note: Naturally and responsibly, my son’s rock star COMS did not drown us, his  parents, with information. She gave us what we needed to build upon and practice and this has been making a difference with Orion.)

I knew how important supporting development was for children with disabilities. I was a fan of early intervention before Orion was born. I’ve always felt that kids should be moving or be moved but did not really have the science behind how it worked. Through my classes, I was excited to learn more about development in children who are blind or DeafBlind. My favorite enlightenment is that movement was based on motivation. Typically, a child becomes motivated by what they see, thus reaching, interacting with and learning about the world around him. It is a different scenario for little ones who are blind or DeafBlind. I want to be able to support development, information gathering and opportunities for kids like Orion.

Through TTU’s Blackboard discussion boards and collaborative projects with classmates (and hopefully future colleagues), I’ve gotten to know, connect with and learn from classmates within Texas and beyond. I was happy to share what Texas had for resources as well as learn from classmates about systems and resources outside of Texas. In a recent class covering the topic of communication with people who are DeafBlind, four of us collaborated on a final project presentation on the fascinating topic of development of touch and tactile learning. My family has been understanding and supporting my need to do loads of reading, researching and writing. Sometimes they would participate if an assignment required it. My family and Orion’s interveners have been a receptive audience for when I’m feeling mindblown and want to share some fascinating information I’ve just learned or wondered about.

This has been an exciting, exhausting, and enlightening journey so far. I know I’ve just barely made a scratch on the surface. I expect the next 15 months to blow me off my feet.