Thursday, October 11, 2012

Day 11: You Got Questions? I Got Answers! Part I

Rehashing an old photo, just because I love it.

Thank you to everyone who asked some incredibly well-thought-out questions the other day, both on the blog and my Facebook posts.  You've definitely got me thinking here...  Because these questions will likely require rather lengthy answers (I have absolutely no ability to make a long story short...), this will be broken into several posts over the next few weeks. 

Q:  How is living with a person with an intellectual disability different than how you would have thought it would be?  What are your greatest challenges as her parent?  What is easier than you would have thought?  What do you wish everyone who met her could see that you might not see in a first meeting?
A:  Wow, 4 in one!  Of course, like any one of us, nobody just envisions living with a person with an intellectual disability if they were not originally touched by disability in some way in the first place.  When Samantha was born, suddenly I was faced with it, watching my entire future life tragically flashing before my eyes.  I can't do it.  We can't afford it.  I'll never have a life of my own, a life of my dreams, the child of my dreams.  I'll forever have a blank, emotionless, slack-jawed woman-child shuffling along behind me.  I thought of the museums we'd never visit, the places we'd never go, the mother-daughter bond we'd never have.  I honestly don't think I really need to tell how life with a person with an intellectual disability is different than I'd thought.  I've seen my life transformed into one with more love, more joy, more excitement, more variety of activity and interest than I could possibly imagine, even than with a "typical" child, I think.  I've seen the lives of my friends who also have children with Down syndrome be transformed in much the same way.
My greatest challenges as Samantha's parent are in keeping her stimulated, educated, active, and in trying to make every moment memorable and special.  Not like these things aren't happening, but I think I make it harder on myself, thinking that teaching should be constant, disappointment in my abilities to make it so, thinking that happy memories need to be made at every moment, worried and guilty when a rainy Sunday becomes a lazy Sunday of no discernible direction.  Instinctively, I know that I can't make those things happen all the time - it's not healthy for either of us.  Also, I have a nasty little habit of wanting to do things for her that she's perfectly capable of doing herself, in the interest of time management.  Seriously, the kid is like molasses.  All in her time...  And that worries me.  I need her to learn self-sufficiency, life skills, independence
 I definitely think that educating Samantha has been easier than I had thought it would be.  The joy I felt in my hospital room after her birth when looking at the pamphlets the social worker brought me was brought on primarily by seeing the photos of children with Down syndrome in classrooms, at desks, holding pencils and learning.  My eyes zeroed in on the glossy, modern images, and I was filled with hope.  From that moment on, I was determined that we would give her everything we could to help her reach her full potential, to show others who may think as I had initially thought that they are wrong.  She proved to be a sponge, absorbing everything around her.  I started her with flashcards at about 18 months, and she amazed me with her insatiable appetite for learning, the pride that showed on her face reflecting our own.
There are so many things I wish others would see when they meet her.  I think because of her language difficulties and her ability to go off on a random tangent about nothing that makes any real sense, they can't see how smart, funny, sensitive or empathic she is.  It's amazing how a quick snapshot of anyone, ourselves included, can yield a very different view than the reality, and snap judgements can be made.  I didn't smile in that first surprise meeting when I was lost in thought?  Well gee, that must make me a mean or miserable person.  Samantha certainly melts the hearts of everyone she comes in contact with, but I want them to be able to see all of her.

More to come...


Tamara said...

I like the question about how living with someone with an intellectual disability is different than expected. I have been struggling with the right words to really capture what I find different, but it's so hard. It's just nothing like I would have expected. Shawen is witty and bright and a fun person to be around. Maybe it's just me, but I don't think most people understand what IQ means. I really think it has more to do with something like a computer's processor speed than understanding or ability to understand. And I think it's different for every person. I have just found it interesting to experience - but not able to put it into words very well -

Yo Mamma Mamma! said...

Thank you so much for answering my questions! Your blog is and always has been so helpful for me, and hearing what you think about these questions I am pondering lately about my doll baby is wonderful!

Kacey Bode said...

Love this. That was my vision too, when Ella was born. Ugh. I hate to think that I thought that way....but I just had no experience! I tend to fall in that everything has to be memorable trap too....for both of my kids...and I assure you that even in Sammi did not have Ds you would be the same way : )

Jenny said...

Excellent questions and answers. I always feel a sort of pressure with Russell when people first meet him...I feel the need to show them every single thing he can do, to show them how smart he is...When really that shouldn't even matter...Russell has a beautiful spirit that I am sure is worth so much more than how many words he knows, or what things he can do yet.
Loved reading all your answers :)

teal915 said...

The crickets stopped lol. Great questions (and answers).

Melissa said...

Molasses! Claire too! I never knew it could take *many* minutes to walk down 5 stairs...I'm with you on first impressions and learning. I always want people to see the very best Claire when they first meet her. I too put so much pressure on myself to try and teach her things that I forget just to enjoy what we are doing.