May 17, 2012 | Subscribe

Growing up with a birth defect

By Raven2009 on Wed, 02-08-12, 14:37

Posted in Group:

Birth Defects

I imagine this forum will eventually attract parents struggling to accept their children's birth defects and give them the best childhoods possible in spite of their children's limitations. I'd like to reassure parents that, from my own perspective as an older adult with a birth defect, it's possible to encourage a child's talents and resilence so that they experience themselves *mostly* as whole and competent, not as defective.

In addition to talking with parents of children with birth defects, I'd be interested in hearing from other adults whose adult experiences have been affected in one way or another by their birth defects.

I have a malformation of the cervical spine. It seemed mainly a "cosmetic" and social problem in my earlier life. The doctors gave my parents a grim prognosis -- that I'd be intellectually disabled, unable to walk, etc. -- and I proved them wrong. However, the defect was (and is) visible and I was sensitive, so I found myself the target of relentless bullying in junior high and high school. Even though I learned to camouflage the defect by growing my hair long in junior high, my limited range of motion was still fairly obvious and of course the wind would blow my hair around and "blow my cover."

There were things I didn't do in high school because of my self-consciousness, but I think they were balanced out by other things I poured myself into. I didn't go to the prom, didn't date at all until I was in college, for instance, but I started writing early and got a lot of pleasure and some recognition for it. I'm 59 now and I suspect that almost EVERYONE'S teen years are tortured. It just boils down to variations on a theme.

That said, I never got good at deflecting bullying. I'm still working on not taking things too personally and on responding from a position of awareness rather than freezing. One thing I only recently realized is that people often assume a physical disability is accompanied by an intellectual disability. Condescending attitudes drove me nuts until I figured this out.

I have chronic pain now as my cattywampus missing and fused vertebrae and disc show wear-and-tear over time. I felt very isolated for a while but have begun to work on finding things I can do and ways to socialize.

Anyway, if anyone finds a jumping-off point in this scattered discussion-starter, I'd love to hear from you.

Raven2009

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By tools on Fri, 02-10-12, 08:31

Thank you for joining this group. I had a lot of difficulty growing up but since my birth defect was not visible I was labeled as lazy and was an easy target for bullying as I am not good at picking up social cues an am over emotional.

Diane
"...Send me half your angels. I'll send you half of mine..."

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By Raven2009 on Sun, 02-12-12, 09:09

Hi, tools. One of the hodge-podge of factors that makes me who I am is Attention Deficit Disorder, a neuro-psychological condition that can strongly affect behavior. It was not diagnosed until I was in my mid-50s. If I had a nickle for every time I was called "over-emotional ...."

When I was a kid, I was always doing things like walking home at lunchtime or recess, thinking the school day was over! And then in junior high, when we'd have to change into gym clothes and then back into our street clothes, somehow I was always missing a button or a zipper or a strap and having to duck behind a building to try to put myself together.

I looked up "agenesis of the corpus callosum" as I'd never heard the term before. It does sound like a challenge, perhaps outwardly similar to Asperger Syndrome?

Thank you for writing back. Babies and young children with birth defects or birth injuries are invariably described as "little angels," but as we grow up we're thrown into the same sink-or-swim environment as everyone else. It probably strengthens us in some ways, but in other ways can leave us with a well of hurt and fear. I think by sharing our experiences with one another, we can better see our own strengths and develop an empathy that helps form the basis for "understanding social cues." (What do you think? I'm not sure if I'm really onto something here, or if I'm all wet!)

Anyway, tools, it's good to talk with you.

Raven2009

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By tools on Sun, 02-12-12, 11:33

I know that things have gotten better once I learned that I am missing part of my brain. Knowing that there is a reason for things makes it easier to accept my limitations.

Diane
"...Send me half your angels. I'll send you half of mine..."

Support Points: 23975

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