A parent’s worst fears is to have a child who is faced with a disability. Growing up, my family and I had an extensive experience with raising a child with a disability. My younger brother was born with total anomalous pulmonary venus return, a condition that occurs when none of the four veins that take blood from the lungs to the heart is attached to the left atrium. This congenital heart disease caused him to suffer many complications that lead to open heart surgery and a mild stroke.
After being hospitalized for about 5 weeks, he came home and was under monitored care. He suffered physically but the emotional and personal challenges were to follow. Much of my mother’s life was focused on finding accommodations for my brother’s ailments. While his case is primarily a learning development issue, dealing with educational institutions and social environments became an everlasting battle.
All too often we found that accommodations and resources for his disability were limited or we encountered less compassionate staff who either under or over represented his need. This caused him to have a very confusing and inconsistent educational experience. He was frequently misplaced or overlooked.
The battle spilled over into his social life. His misplacement into classes for the mentally retarded lead him to being scrutinized and socially out casted and depressed. Being placed in regular classes with students who were far more advanced than him allowed for him to be criticized by his peers and viewed as the inferior child and also caused him to be outcasted. It wasn’t until he was rightfully placed, years later, in low development classes that he could adapt to his circumstance.
There are many challenges we faced as a family trying to learn how to create a functional support system for his condition but none of us could ever fathom or understand the heartache and effort my mother lost sleep over for her son’s survival. To this day, my mother continues to make his needs her main priority.
Many of their hardships came from the lack of information, resources and understanding of disabilities. While we are at a greater advantage in the 21st century with more knowledge at our fingertips, these challenges are ever-present. As parents we do not have control over nor can we predict circumstances such as these but if we are faced with them, we must seek assistance, become well informed and know our rights. There is a plethora of things I am not familiar with concerning disabilities but it becomes my job, for my daughters sake, to do everything in my power to ensure her well-being.