For some time now I wanted to write about the problems related to the isolation, depression, and possible guilt that special needs parents may have experienced or for that matter continue to experience. I had an opportunity recently to talk with my parents about this subject. It was not a shock to me on how my mother suffered the most while I was growing up and even now as I am an adult at 24-years old.
Both my mom and dad shared that parenting a special needs child comes with many emotions and challenges that can be extremely difficult to deal with. One of the most difficult one for my parents and for so many other parents is the isolation they felt and continue to feel from family, friends, and fears of what challenges were ahead in the future.
When I was born and my parents were told by medical specialists of the many possible developmental issues I would be faced with, they dedicated themselves into the medical issues and put other matters off to the side including enjoying their marriage and time together. It is known that special needs parents regularly research challenges and issues concerning their child, speak with doctors, school counselors, therapists, special education professionals, all in a major effort to help their child have the best fulfilled life possible. Additionally, they try as hard as possible to lead their child to a good well-rounded education, and a future of financial and living independence. They also want to make sure all is in place once they are gone. Presently, my parents are going through this now as both my father and mother being retirement age.
With some of the research I’ve done on this subject as well as seeing first hand with my parents, in most cases with the various preparation and planning parents do to help their children with disabilities, parents fail to prepare themselves fully for the long and difficult journey. They don’t realize just how life-altering raising a child with special needs will be. In some cases, parents might find themselves going through a wide range of emotions including denial, anxiety, sleep deprivation, depression, isolation, and grief. Unfortunately for my mother, she suffered all these issues at the same time. My mother said, “unless you’re one of the lucky parents, the isolation, depression, and guilt can almost become an even bigger issue than the diagnosis of your child and what the future may bring for them and parents.”
Truly understanding the realities of special needs parenting are in no way is it a reflection of my parents or anyone else’s parents feel about their children. Most parents probably feel the same way as mine, being, they would move mountains to help us, not worry about the cost, and not worrying about their personal lives being compromised. My mother often feels depression and guilt because of her high-risk pregnancy and the abnormality of a reverse umbilical flow which caused the deficiency of my proper fetal growth, extreme prematurity, and various developmental issues.
A Short List of Issues my Parents Experienced:
• Feeling so sad of my not being invited to playdates because I was delayed with walking, talking, and understanding age related social interaction
• I couldn’t keep up with the other children either playing or talking
• My eating issues prevented me from being invited to most parties because I couldn’t eat what the other children could eat as well as needing assistance to eat
• At school, I was placed in self-contained special education classes so I was not in the same classes as my neighbor’s kids or other mainstream students. This also affected my mother because she was now limited with other socialization that was normally offered in those environments by mingling with other parents
• In middle school and high school, there were many social gatherings I was not included in, other than my special education classmate activities and functions
• Family and various neighbors being curious of why I was not dating in high school or driving yet in my 20’s
• Questions being asked by family members and various people why I was not going to college and why I was continuing with vocational school after my high school graduation
Source of Information: Personal Experiences
Until Next Week, Stay Safe and Well!