ECI Guest Blog: Leah Rummel

March 24, 2014

Brandon after leaving the hospital.
A baby lays in a nest of blankets while tubes run from under his brightly colored clothes.

When my son Brandon was born 21 years ago, I had no idea what to expect for the future or even the next day. Brandon was not premature and his birth was not complicated, but something was wrong. Shortly after birth, Brandon was struggling to breathe and to swallow, and he started having seizures. He was a fighter, though. He came home after one month in ICU at the hospital (left).

Brandon did not come home alone. Into our daily lives came a machine to monitor how often he stopped breathing, a machine to monitor his oxygen levels, an oxygen tank, a nebulizer, and a suction machine. Plus, we had to learn how to feed Brandon by inserting a tube down his mouth and how to help him to become healthy.

At the time I was working at the Texas Department of Insurance regulating Health Maintenance Organizations (HMOs), and I thought I was educated on all of the resources in the community and health care in general that could help us. I began to realize, though, that my family was ill equipped to handle or understand caring for Brandon in our home, and that there was so much more I needed to learn.

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Brandon signs his first word, "Momma."
A young child in pajamas smiles while holding his hand up to his face, palm open.

Luckily, Brandon was referred during his discharge from the hospital to Early Childhood Intervention (ECI). Within a few weeks after discharge, the Easter Seals arrived at our house with an entire team of experts who fully understood Brandon’s needs, performed a complete assessment on him, and developed a complete treatment plan with input from my family. They explained our family’s role in the treatment plan and how they would train us, plus provided additional community resources.

In the beginning Brandon received speech, occupational, and physical therapy, nutrition services, and a home nurse to check on his medical condition. An Easter Seals case manager (social worker) met with our family on a regular basis (today, this is coordinated with an insurance plan and the parents pay a copay based on the family income, an improvement in the program’s sustainability). 

Brandon was very engaged, eager to learn, and began to thrive. He learned to talk, sign, began to eat without tubes, to hold his head up, to stand up, to walk, to identify colors, shapes and many other basic skills that most people take for granted. Each one was a major victory for us all to celebrate.

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Today- Brandon at work.
A woman points at a text on a sheet of paper to a young man pushing a cart full of files.

Today, Brandon is in the Adult Transition Program at the Eanes School District in Austin. He loves the Beatles and works at a live Beatles Radio show. He also works at UT in the afternoons delivering mail (left). He will complete his education at Eanes in one year. His goal is a smooth transition from a school based program working among his peers, living in his own house, and continuing to build lifelong friendships.

ECI made an incredible difference in Brandon’s life, in his progress, in our families’ understanding of this treatment and prognosis, and his successful transition into the school system at age 3. Brandon is a real example that early treatment is key to success.

Keep up with Brandon’s transition at my blog here.

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About Leah

Leah Rummel has been an advocate for persons with disabilities for over 20 years. She was recognized as the Volunteer of the Year for her efforts as a long-time parent advocate and board member of Texas Parent to Parent. She currently serves on the Children’s Policy Council, Employment First Task Force, and I/DD System Redesign advisory committee. Leah works at UnitedHealthcare Community Plan of Texas and has one son who has disabilities.

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