Reminds me of some the nonsense my kids do at "homework time," if you can call it that.
Last week I read a post by a Autism Daddy called, “To The Parents That Say “I Wouldn’t Change My Kid For The World”, I Say Bulls–t!!” I was impressed by his heart-pounding honesty, but it truly made me think, and think hard.
He complained that it was an absolute lie when parents said they wouldn’t cure autism.
Now, granted, Down syndrome is not autism, but when my friend CJ called for blog posts about “Undoing Down Syndrome,” I couldn’t resist.
The fact is, disabilities are hard…on kids. I’m not going on about the parents, because, really, all parenting is hard. I’ve heard parents talk about “angel babies” (I have), or kids adjusting perfectly to school, or manner-filled teens, but I’ve never heard, “He was an absolute dream from birth through the time he moved out on his own.” Not. Once. That’s just part of the job, no matter what your kid is or isn’t, he has gone through one phase or another that had you scratching your head, dreaming of the end of the day, or running for the Motrin or a nice glass of wine once it was over.
But kids? What kids who have disabilities have to endure, sucks (don’t get me started on bullying), but it’s even worse when they don’t get that someone is being cruel or mocking them, or when they’re frustrated over their very real inability to think as you’ve advised them. Not only that, but having a learning disability means kids are reliant on you for longer, which makes you all kinds of queasy inside when you think about your own eventual death. Double that queasiness if you were dumb enough to start your parenting years at age 37. (Ahem.)
So, would I undo Amelia’s Down syndrome? Would I like to cure Zoe’s autism? I am, after all, following biomedical solutions for my daughters, and while I can dance around “pure healthy nutrition” all I like, the fact remains that I got on this path to cure Zoe, plain and simple, subconscious or otherwise…and learned that Amelia could benefit intellectually as well.
I wouldn’t want to change their personality, or who they are, nor would I want to change the woman they’ve helped me to become. But if I could talk to them age-appropriately, if I could see them running to the park or the movies or the mall with their friends, if homework were not a long, drawn-out endurance campaign or race around the table because they totally know they don’t get it, if I didn’t have to change diapers on a 6 year old or calm a child hurting herself or wonder on any given day if they’re in pain or search high, low, and everywhere for a dentist they’ll allow to put his hands in their mouths, if, if, if…
Wouldn’t I? If I had a better chance that they could chose college if they desired, hold jobs or careers, start families if they wanted, wouldn’t I? If I knew for sure that the day I meet my Maker, they could handle being on their own, rather than in a home (as if, that’s not a good option, who knows, maybe it’s fine), would I undo the way they are?
My real answer is this: Like ANY parent, I would do my best to fix the things that maladapt them to life. A child lies, you discipline that, right? A teen cuts herself, you address the problem behind it, right? Change is good, if you are moving from a self-destructive behavior to one that they can live with peacefully. So, no, I would NOT* “undo” Down syndrome. God has a plan, and they are who they are supposed to be for now.
I will, however, aggressively find solutions that help my girls think clearer, sleep better, handle aggression with more control, and in general, succeed in life. Any therapy, any supplement, anything I can do that will not damage them further is worth it, if it eases their lives and brings them to what they want out of it.
Like any good parent.
*A good parent, a so-so editor, especially when I’m sick. I meant to write I would not undo it. Sorry, that COMPLETELY changes the meaning of my post.
Free image from FreeDigitalPhotos.net
Katrina Stonoff says
Did you mean to have a “not” in this statement? — “So, no, I would “undo” Down syndrome.”
I would not undo it (but again, Down syndrome is not autism, which appears to be the result of some kind of environmental damage). Yes, the disability makes our children’s lives harder.
But not being an athlete is making my typical son’s life harder right now. Not being smart makes life harder. Being short makes life harder. Not being pretty makes like harder. Heck, being a minority makes life harder. But nobody talks about fixing those “problems.” Because they aren’t considered problems, just characteristics. And because we’re still close enough to Nazi Germany to recognize a slippery slope when we see one.
Or do we? How is Down syndrome different?
admin says
Thanks, Katrina, thoughtful response! I guess I don’t see it so much as a negative…she has Down syndrome, Zoe has autism, it is what it is. Can be it be changed, or cured? I’m reading revolutionary stuff on that and the answer is “I don’t know.” I’m not ashamed AT ALL of my kids’ disabilities, and yea, you’re right, it is harder to be non-athletic, or shorter, or not pretty (the ones I can relate to). I look at disability on a behavior-by-behavior basis, right? So if my child could not ever possibly, no way walk, then I wouldn’t think about “I wish she could walk!”, I would think about, “What can she do, and what can we do to make it better?” I totally get that unchangeable things need to be accepted, but what is and what isn’t unchangeable in terms of behavior? I NEVER thought Zoe would sleep through the night, I NEVER thought Amelia would have any focus in school – doctors sort of agreed – but I discovered they were wrong. So in that aspect, where do I get off saying, “This behavior or that behavior can’t be adjusted?” Hm, make sense? Just self-improvement for our kids.
Chris Thompson says
Wonderful post. I completely agree with the idea that parents get bull headed and resist the idea of changing their kids for some nonsensical reason.
Parenting is coaching. Coaching means helping someone change for the better.
I learned about something called present state versus desired state. To get to the desired state involves change, obviously. If we don’t want to change, it’s called complacency 🙂
Obviously we should encourage our kids to change.
Your post was a wonderful reframe.