If I had an O.I. Child

At this point in my life I would rather raise a drooling three-headed dog than a human being, I'm just not interested in having kids. It's more than the genetic risk or the potential damage it would do to my physical anatomy, right now I have an aversion to all crapping, gurgling, milk chugging, and diaper-changing babies. When other people are "ooh-ing" and "aww-ing" over babies I automatically zone out. To me the wisps of fish-scale clouds are far more interesting. Of course given how old I am this could easily change in the next 10 years...(is this what people mean when they say life is an adventure?? Because to me it's just shit scary!)

But this doesn't mean that I have my own ideas of parenting. In the natural progression of this blog I've written many entries that inadvertently comment on parenting, and what I think is "the best thing to do." Probably .009% of these comments come from my brain, but the rest comes from experience - from what my own parents have done. Whether I intended to or not I have done it over and over again: What would I do if I had an O.I. child? What would I do the same as my parents? What would I do differently? 

5 Things I would do Differently:

  1. Instead of isolating me from other O.I'ers I would encourage more interaction with O.I'ers. Whether that means camps, or conferences -- I now understand the benefits of being a part of the community. Too many times growing up I would wonder this question silently to myself What do other kids like me do? How do adults with O.I. do this? It'd be so much easier if I knew someone like me. Sure, O.I. might be a very rare condition but from my facebook page alone, I know that 241 of you exist!! 
  2. Though my parents did this on occasion I wish they would do this more, particularly when I was a teenager: Put the person first and the O.I. second. Not only does this enforce a life time of 'can-do' mentality, but it strengthens skills in adaptation. Learning to adapt life and the things you want to do to the disability instead of the other way around is empowering, and to me, is critical to living successfully with a disability. Had my parents stressed this more with me I would be less afraid to try new things or feel less like I need to "prove" myself.
  3. Trust that I will figure things out on my own. My parents had a tendency to jump to me and my brothers' every beck and call (we were/are incredibly spoiled and in many ways I find it wrong and slightly embarrassing). I think this is similar to the point above -- allow me to figure out how to adapt instead of being reliant and counting on someone else always being there
  4. Perhaps it's because the rest of my family is unaffected by O.I. that it's difficult/impossible for them to do this, but I wish my parents had been more open to discuss the differences between having a disability and being 'normal.' Especially during the time of my life when it was most consciously obvious to me, during adolescence. 
  5. Don't hide feelings of being helpless or scared. I've said this before but I will say it again: when kids see you are vulnerable that's how they know you're human too. Parents will seem less like they are 2000 Light years away (Green Day reference!) and it will be easier to bridge the gap, especially if the gene is a mutation and no one else in the family has O.I.

5 Things I would keep the Same:
  1. I would continue to keep school and the pursuit of education as a top priority. I grew up knowing that education is a place of no boundaries and can be used in incredibly empowering ways in the life of an O.I.'er 
  2. As over protective as my parents and family were of me they still encouraged my (nerdy) interests and talents in every way possible. I am thankful for this because these developments have given my life meaning and has been a frequent and positive distraction to some of the more challenging/painful aspects of having O.I.
  3. Treat all siblings equally regardless of whether or not they have O.I. or the status/type
  4. Whenever I was injured or had a cast, and even shortly after leaving the hospital from surgeries my parents would always encourage me to go back to my 'normal' routine. I was still expected to go to school as soon as that cast was dry, or once I was discharged from the hospital. Music lessons, attending my brother's soccer games or track meets, and socializing with my friends -- all of that day-to-day activity resumed without a hiccup. 
  5. Work together (with the child) to figure out ways to adapt equipment so it is most comfortable for the one who needs it. I was lucky that my mother was so crafty and creative with her ability to adapt supposedly accessible equipment to make it.. even more accessible for me.

If you have O.I. what would you do differently or the same? 
And if you are a parent what would you change or keep the same?   

Posted in , , , , , . Bookmark the permalink. RSS feed for this post.

Leave a Reply

Copyright © 2011 Perfectly Imperfecta. Powered by Blogger.