There is something in all of us that wants to be accepted, warts and all. We don't want to have to change, to smooth off our rough spots, or to alter the core of ourselves to be "liked".
There has been a big campaign that has been seriously pushed: "more alike than different". And while we bloggers tend to want to tell you how much we love our kids, sometimes, what ends up in the translation is only the sweet, beautiful, and general awesome-ness of our kids and our lives. Also, often the "people first language" is pushed to the crazy levels of excluding those who don't know about it from our lives.
I've tried to be truthful about the crummy parts of my life, as well as the good stuff, but I thought I'd be all blunt today...well, to be honest, I've been writing this post in my head for about a week.
Apparently, this hasn't just been rolling around in my head, Green Tea Ginger addressed it yesterday HERE.
Our kids are "more alike" because they too have bad days. Our kids are more alike, because they are mean. Our kids are more alike because they talk back, even if we are only discussing body language. Our kids are more alike because they have massive strengths unique to themselves. Our kids are more alike because they don't feel like doing homework or cleaning their room. Our kids are more alike because they pick up all the family oddities. Our kids are alike, in their uniqueness and their differences.
No two typical kids are alike. No two special kids are alike. No matter what disability we are discussing.
We don't love our kids because they are perfect angels. We love them because they are our kids. We are driven off the crazy deep end by our typical kids and we are driven off the crazy deep end by our special kids. We will turn into a raging bear if you mess with our typical kids, and you've never seen a "Mama Bear" until you've seen a mother have to stand in the gap for a special kid.
I love the movie Penelope.
I was watching it for laundry folding entertainment and this quote hit me more potently than usual:
"'He didn't like your nose, that's what hedidn't like. You're not your nose.'
'But, it... it is my nose.'
'No! lt's your great, great,
great grandfather's nose.
On your father's side.
He did this to you... to us.
But you are not your nose.
You are not you.
You're, you're, you're...somebody else inside just
waiting to come out.'"
I found it rather poignant that we feel the need to argue that you are someone underneath your "big" oddities or disabilities. Aren't we all ourselves under our differences? Can we not claim our differences without inherently damaging our core? We are worthy of love and acceptance before our disabilities or differences are "fixed".
I haven't read up on the actual science behind the ability to alter the T21 chromosome. But I have a sneaking suspicion that part of the backlash is the offer of a "cure" before acceptance. Still. In the face of regulation and hate speech and all that...we still are offered a "cure" before our kids are allowed to be themselves...which brings up, what will be "fixed"? What will be taken away? Will a viable and important part of their inherent make up be taken?
On Brian Skotko's blog page, these statistics were shared:
"We mailed surveys to families around the country, and 3,150 mothers, fathers, brothers, sisters and people with Down syndrome responded. Here is just a sample of what we found.
About 10% of people in the US battle depression according to the CDC. The highest level of "very happy" people measured by Nation Master in 50 nations was only 55%.• 99% of people with Down syndrome said they were happy with their lives
• 97% of people with Down syndrome liked who they are
• 99% of parents said they love their child with Down syndrome
• 5% of parents felt embarrassed by their child
• 97% of brothers/sisters, ages 9-11, said they love their sibling*All of the surveys’ results have just been published in the American Journal of Medical Genetics."
Do we really need to "cure" Down Syndrome? Maybe we should be taking lessons in acceptance and peace and happiness. They are not vegetables who don't know any better. As a group, the abuse statistics are nauseatingly high amongst those with special needs. Yet, they still have us beat with peace and happiness in a quantifiable comparison.
Maybe we are the ones that need the cure.
I highly recommend this movie. I've you've seen it or don't want to, this is a TOTAL SPOILER clip, be warned.