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My Running Shoes
by Linda Bullard

Come…slip on your running shoes and take a run with me. I would like to share my hopeful story with you.

Well during my college years I developed a love for long distance running which really equated to training for and ultimately participating in a marathon. Never did I imagine I would have to apply similar training skills to the care of my youngest daughter. At twenty-two months my daughter had recovered from a near death bacterial spinal meningitis battle for her life. She did win the battle but not without some battle scars. The antibiotics that saved her young life had stolen her hearing. She was profoundly deaf. The doctors explained to me that she would have to stand under a jet airplane in order to feel its sound. So my focus on running shoes and the distance of my run for the day ultimately changed. Researching different means of communication and other options became the new plan for my silent daughter’s needs.

As a natural progression when training for a long distance run, a new world unfolded for my daughter and me. I learned to become my daughter’s advocate because the Special Education Laws were young at the time and subjected to the interpretation of the state. I soon acquired the reputation of being the “quiet but tenacious momapostrophe successfully working with state and city agencies in order to receive the services and equipment my daughter needed. We spent countless hours learning oral and lip reading skills, cued speech, several variations of sign language, and seemingly endless hours of speech therapy. Even the University of Oklahoma became interested in my daughter and me. On several occasions, they invited me to present to their students from a parent’s perspective.

During our countless days of seemingly long distant runs, I learned that the important ones in this race were my daughter and me. It did not matter how fast or slow or how far we were running, we were competing only with ourselves. My daughter attended Sunshine Cottage School for Deaf Children and became the first child at Wilford Hall Hospital to receive a Cochlear Implant soon after the FDA approved it for children. She learned how to play the piano, took dance lessons, and actively participated in Girl Scouts. I needed to attach some credibility to the skills I had acquired from this training. So I attended the University of Texas in San Antonio and shared my newly acquired skills: including language acquisition, encouraging the university to offer Sign Language as a foreign language, and teaching my peers to work with the deaf in their classrooms. We needed to stay strong, persevere, and continue to move forward. Stopping or looking back was not an option...

I don’t know if you ever really reach that final finish line and stop racing. But I do know that there comes a time when the one being trained needs to begin making those long distant runs by themselves. I had been the advocate for my daughter for almost twenty-five years. There has to come a time for her to become an advocate for herself.


Self-advocacy…when do I let go and allow my daughter to begin?

Self-advocacy refers to:

an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions (Van Reusen et al., 1994).

Needless to say, her training began with baby steps to walking to running and ultimately progressing into her own long distant runs as her own self-advocate.

When my daughter began researching for a college to attend she discovered that the Special Education Laws were different for that level of education. The Individuals with Disabilities Education Improvement Act of 2004 (PL 108-446), as well as previous versions of IDEA, this law had mandated schools to provide a free and appropriate public education for students with disabilities. However, after graduation from high school this was no longer guaranteed her. So at the college level, the Americans with Disabilities Act (ADA) of 1990 (PL 101-336) and/or Section 504 of the Rehabilitation Act of 1973 (PL 93-112) and Section 508 of its amendments (per the Workforce Investment Act of 1998 [PL 105-220]) would apply for her. These laws did not guarantee that all of her individual college education needs would be met. Essentially these laws would ensure her equal access, and obtaining services would become an eligibility issue. For these reasons, my daughter needed to become a self-advocate and have her necessary supports in place. My daughter had to develop her own plan of training and goal setting to become successful in her personal long distance run.

My daughter’s plan:

  • Understanding her disability including her strengths and limitations.
  • Visiting the different Disability Support Services (DSS) on each individual college campuses (finding the most supportive college).
  • Leaning to be successful despite her disabilities (developing perseverance).
  • Setting goals and determining how others could contribute to her success.
  • Developing problem-solving and self-management skills.
  • Developing relationships with:
    • Instructors
    • DSS staff
    • Friends
    • Mentors - Texas Department of Assistive and Rehabilitation Services (DARS)

Today, my daughter chooses to be a part of both the oral and signing world. She attends Palo Alto College, on the President’s Honors List, a member of the Student Leadership Institute, completing her Associates degree by the next spring semester, and continuing on for her Bachelors degree in Graphic Arts. I still participate in these long distance runs…but mind you…I run at a much slower pace, remaining a little farther and farther behind, but ready to assist only when my daughter insists.

About the author:

Linda Bullard lives in San Antonio, Texas, with her daughter. She is currently a middle school teacher and continues to enjoy the outdoors.

Reference:
Van Reusen, A. K., and C. Bos. "Facilitating student participation in individualized educational programs through motivational strategies and instruction." Exceptional Children 22 (1994): 30-32. Print.