Finally, at age 60, I am really trying to untangle the effects of growing up with a congenital facial disfigurement (Moebius syndrome) within a family system that included alcoholism, suicide, narcissism, emotional coldness and verbal abuse. But 60 years ago, I knew none of that.
There are numerous books available for parents that have kids born with disabilities. The books all describe the 'greiving process' and the incredible angst they all go through while adjusting to the baby with a (or many) disability. It must be assumed that the primary concern is for the parents' emotional state - and it's also assumed all parents "do the best they can" (in other words, think "Mother Theresa")
While there are autobiographies of people with disabilities, most tend to present the strengths their parents imparted to them, enabling them to be all they could be.
It's far more difficult, however, to find stories of people with disabilities whose parents were immature, narcissistic, emotionally and verbally abusive ... but still 'looking good' because the child was fed, clothed, etc.
I can't think of anyone in my extended family who even HAD a disability when I grew up. I was born with club feet, crossed eyes and a facial paralysis - all symptoms of Moebius syndrome (congenital facial paralysis). ALL I know re: my own childhood, came via long-ago observations and conversations ...
"Your father went out and cried the night you were born" (Hint - you really hurt your dad!)
"We were afraid to have more children because of you" (Hint - you totally *&^%$'ed up our family!)
No newborn pictures, no baby pictures, no baptism or first or second birthday pictures. When I asked, I was yelled at. Years later, I found some pictures - taken by relatives.
I was baptized at home. When I asked why, my mother yelled at me, saying that they didn't know whether I'd live or die.
When I started to ask questions re: why I couldn't smile, my mother said "you're just feeling sorry for yourself", "you're just DIFFERENT!" or "you want me to end up in Elgin (state mental hospital) some day?? STOP ASKING QUESTIONS!"
I remember absolutely no warmth at all from my mother. The only "warmth" I have 'found' are her smiles in pictures - or computer printed cards with syrupy messages - EASILY ignored by her. So her "warmth" was, at best, artificial. Yet she was convinced she was Mother Theresa.
The fact that I was teased in school as a kid - was absolutely a non-anything for her, same with ANY discussion regarding my very obvious facial disfigurement. My ONLY choice was to stop having feelings. I also decided to become a teacher, to (1) undo the (&*^$% of my school experiences by becoming the world's best teacher, and (2) who would ever want to marry ME?
While it most likely is true that parenting a child with a disability has challenges, the absolute same thing can be said for every child born with a disability! Yet I have NOT found ONE book that adequately describes these children's very real emotional needs! Being expected to always be grateful for a parent's "sacrifices" et al is NOT a mentally healthy concept for a child who did NOT prenatally engineer his or her own disability as a passive-aggressive maneuver against unsuspecting parents. "We" didn't pick what we got. Yet "we" are indirectly blamed as the source of parental stress.
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