How My Brother's Developmental Disorders Shaped My Life: Stacey's Story

Reviewed Dec 30, 2017

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Summary

Stacey’s brother still influences her with his endless excitement and love for life.
 

On Oct. 7, 1994, my brother, Nick, was born. I was 5 years old. His birth has forever shaped my life.

Caring for Nick

Nick weighed only one pound 10 ounces and was three months premature. My family was told he had only a 50 percent chance of living. He was near death for the first year of his life. Then, he was in-and-out of the hospital for over two years due to problems from his prematurity. I was too young to visit him at the hospital. 

After working all day, my parents visited my brother every evening. I would go to day care after school and my grandparents or family friends would pick me up. I learned new skills during this time, like how to take care of myself.

My parents tried to include me in all of my brother’s care. At 8, I learned how to hold him and give him breathing treatments. I could feed him, and give him meds through his stomach tube. I put on his nose tube and checked his pulse. My parents and visiting nurses taught me how. 

Making positive changes

I felt overlooked by my family and needed a hobby of my own. When I was 9, I took my first horseback riding lesson. Horseback riding filled that need in my life. My passion for riding developed into competition. I read Chicken Soup for the Soul, and learned about a woman who lost most use of her legs after a very bad accident. She began to ride. It helped her become fully capable of walking on her own again. This made me think that it could help my brother’s cerebral palsy and pervasive developmental disorder. 

It took some time, but I talked my riding teacher into working with my brother. I went to every lesson until she was comfortable with him. He made great progress. Horseback riding made me want to work with disabled children.

Other experiences helped shape me. Nick was involved with speech and occupational therapy and I loved helping him during the sessions. When I was 11, therapeutic staff support came into our home to help him with socialization and sensory needs. I learned many skills during this time, such as patience, focus, and optimism.

Looking toward the future

Growing up with Nick has helped me know what other families go through. I was fearful Nick was going to die. I was jealous of being overlooked, and lonely because I felt no one cared. I also gained compassion watching him struggle to walk, breath, and just survive. I learned optimism in seeing him take his first steps or breathe without the help of a ventilator. And I feel love when he tells me, “Goodbye sissy, have a great day.”

Nick still influences me with his endless excitement and love for life. I still aid in his care and give my parents a much needed break. We are both still riding, and our teacher has since opened her barn to five disabled riders. I am in graduate school, studying to be a physician assistant. My dreams include starting a therapeutic horseback riding program for children with similar issues as Nick.

By Stacey Klaus, daughter of Suzanne Klaus, Prevention, Education and Outreach Manager, Beacon Health Options

Summary

Stacey’s brother still influences her with his endless excitement and love for life.
 

On Oct. 7, 1994, my brother, Nick, was born. I was 5 years old. His birth has forever shaped my life.

Caring for Nick

Nick weighed only one pound 10 ounces and was three months premature. My family was told he had only a 50 percent chance of living. He was near death for the first year of his life. Then, he was in-and-out of the hospital for over two years due to problems from his prematurity. I was too young to visit him at the hospital. 

After working all day, my parents visited my brother every evening. I would go to day care after school and my grandparents or family friends would pick me up. I learned new skills during this time, like how to take care of myself.

My parents tried to include me in all of my brother’s care. At 8, I learned how to hold him and give him breathing treatments. I could feed him, and give him meds through his stomach tube. I put on his nose tube and checked his pulse. My parents and visiting nurses taught me how. 

Making positive changes

I felt overlooked by my family and needed a hobby of my own. When I was 9, I took my first horseback riding lesson. Horseback riding filled that need in my life. My passion for riding developed into competition. I read Chicken Soup for the Soul, and learned about a woman who lost most use of her legs after a very bad accident. She began to ride. It helped her become fully capable of walking on her own again. This made me think that it could help my brother’s cerebral palsy and pervasive developmental disorder. 

It took some time, but I talked my riding teacher into working with my brother. I went to every lesson until she was comfortable with him. He made great progress. Horseback riding made me want to work with disabled children.

Other experiences helped shape me. Nick was involved with speech and occupational therapy and I loved helping him during the sessions. When I was 11, therapeutic staff support came into our home to help him with socialization and sensory needs. I learned many skills during this time, such as patience, focus, and optimism.

Looking toward the future

Growing up with Nick has helped me know what other families go through. I was fearful Nick was going to die. I was jealous of being overlooked, and lonely because I felt no one cared. I also gained compassion watching him struggle to walk, breath, and just survive. I learned optimism in seeing him take his first steps or breathe without the help of a ventilator. And I feel love when he tells me, “Goodbye sissy, have a great day.”

Nick still influences me with his endless excitement and love for life. I still aid in his care and give my parents a much needed break. We are both still riding, and our teacher has since opened her barn to five disabled riders. I am in graduate school, studying to be a physician assistant. My dreams include starting a therapeutic horseback riding program for children with similar issues as Nick.

By Stacey Klaus, daughter of Suzanne Klaus, Prevention, Education and Outreach Manager, Beacon Health Options

Summary

Stacey’s brother still influences her with his endless excitement and love for life.
 

On Oct. 7, 1994, my brother, Nick, was born. I was 5 years old. His birth has forever shaped my life.

Caring for Nick

Nick weighed only one pound 10 ounces and was three months premature. My family was told he had only a 50 percent chance of living. He was near death for the first year of his life. Then, he was in-and-out of the hospital for over two years due to problems from his prematurity. I was too young to visit him at the hospital. 

After working all day, my parents visited my brother every evening. I would go to day care after school and my grandparents or family friends would pick me up. I learned new skills during this time, like how to take care of myself.

My parents tried to include me in all of my brother’s care. At 8, I learned how to hold him and give him breathing treatments. I could feed him, and give him meds through his stomach tube. I put on his nose tube and checked his pulse. My parents and visiting nurses taught me how. 

Making positive changes

I felt overlooked by my family and needed a hobby of my own. When I was 9, I took my first horseback riding lesson. Horseback riding filled that need in my life. My passion for riding developed into competition. I read Chicken Soup for the Soul, and learned about a woman who lost most use of her legs after a very bad accident. She began to ride. It helped her become fully capable of walking on her own again. This made me think that it could help my brother’s cerebral palsy and pervasive developmental disorder. 

It took some time, but I talked my riding teacher into working with my brother. I went to every lesson until she was comfortable with him. He made great progress. Horseback riding made me want to work with disabled children.

Other experiences helped shape me. Nick was involved with speech and occupational therapy and I loved helping him during the sessions. When I was 11, therapeutic staff support came into our home to help him with socialization and sensory needs. I learned many skills during this time, such as patience, focus, and optimism.

Looking toward the future

Growing up with Nick has helped me know what other families go through. I was fearful Nick was going to die. I was jealous of being overlooked, and lonely because I felt no one cared. I also gained compassion watching him struggle to walk, breath, and just survive. I learned optimism in seeing him take his first steps or breathe without the help of a ventilator. And I feel love when he tells me, “Goodbye sissy, have a great day.”

Nick still influences me with his endless excitement and love for life. I still aid in his care and give my parents a much needed break. We are both still riding, and our teacher has since opened her barn to five disabled riders. I am in graduate school, studying to be a physician assistant. My dreams include starting a therapeutic horseback riding program for children with similar issues as Nick.

By Stacey Klaus, daughter of Suzanne Klaus, Prevention, Education and Outreach Manager, Beacon Health Options

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