Saturday, September 04, 2010

It's Complicated

As I was walking out of the kids' school 2 days ago, I passed a father carrying his little girl in. The school is primarily a special needs school, so it was no surprise that his child has visible challenges. I glanced at his daughter and smiled instinctively, as you would passing another parent. He half-smiled and looked down quickly. If I didn't know better, I might have thought he was embarrassed, and might have taken it further and judged him for it. But I do know better. At least I think a do. It is certainly possible that I am reading FAR too much into this quick exchange, but I have a hunch that I am not. I have said it before and I will say it again. Parents of kids with special needs are a tribe of our own. There is a common thread that ties all of us together, and it is struggle.

Each of us has flaws. Our children all have weak spots. We are all vulnerable in one way or another, we simply are savvy enough to hide those vulnerabilities from the rest of the world most of the time. Most kids with special needs wear their vulnerability on the outside. As a result, simply by existing, they are up for inspection by other people. Upon walking (or being carried) into a room, with a quick glance, judgement can be cast, and it can be hard to crawl out from under. This must be hard for a child to bear. Unfair is the word that comes to mind. Such a burden. For parents of these sweet children, it can be agony. We all want our children to be loved. We want them to be accepted, not so much for us, but for them. We don't want to see them struggle, and these kids are already saddled with so much extra struggle that seeing them further burdened by other people is just horrible. Yet another way to twist the knife. Children can be cruel. If you survived middle school, you know that. And odds are, if you are reading this, you are not a special needs adult. So truly, we have no idea what those kids have to endure. Take your worst feeling of rejection, multiply it by 100 and then experience it every day, over and over again. Yeah, that's reality for these kids.

We would love to think that people, at least adults, would have the social skills, maturity and human decency to be kind to those with special needs. The simple fact is, they don't. Please watch this entire video.

As a mom, particularly a mom of children with special needs, watching this video made me feel like knocking someone out. For sure, I would have been on the evening news had I been witness to this sort of thing. It makes me fighting mad. The sad thing is this isn't just a little prank. This is real life for millions of people every day. I hope as you watched that video you are appalled. I hope you got teary. I hope you are angry. But I hope more than anything that you will evaluate your behavior toward special needs kids and their parents. I hope you will have a talk *today* with your children and explain special needs to them as best you can on their level. I hope you will mandate that they treat all other children with kindness and respect and that there will be severe consequences in your home if they don't. I hope you will not laugh at "short bus" jokes, nor permit such talk in your presence. Keep in mind that could be my children on that bus. It could be your child. You have no idea and no control over what lies ahead for your children or grandchildren. Absorb that for a moment. I promise that no one in my shoes walked into parenthood expecting to deal with special needs. We just expect status quo, and are always shocked when reality hits us. I want to make clear that of all of the parents out there, our burden is most definitely LIGHT. Super light. I see the hard stuff in the walls of my children's school and I admire those parents and wonder how they cope. Of course they love their precious children, but I bet every one of them would take an Easy button about now if you offered it.

So let's go back to that dad. I think he looked down out of instinct. If shows like "Lie to me" are to be trusted, we all have tells-involuntary movements or mannerisms that scream what we are feeling or thinking, in spite of what we want the world to know. I think he looked down not because he was ashamed of his daughter, quite the contrary. I think he loves his daughter. He loves her deeply and could not bear to see if I would somehow reject her upon seeing her. It is excruciating to see another person reject your child, even when your child has no idea its happening. You feel angry, furious even. You are mostly hurt, as anger is a secondary emotion, but you are angry nonetheless. You want to keep them in a bubble and protect them from what lies ahead. You promise yourself you will shield them from this rejection all of their lives, but you know this simply isn't possible. Mostly its an aching feeling. Always there in the back of your mind reminding you to worry. Obviously that 2 seconds has weighed on my mind in the last few days. I want to encourage you to pay attention to other people and to your own mannerisms that might convey rejection to someone who is extra vulnerable. Go out of your way to make them feel accepted. Get out of your comfort zone. Be kind without offering pity. Be respectful. Say your prayers. God knows we all need them. But mostly, just pay attention please.


Peggy said...

Being a SAHM I tend to forget how awful people can be. That video makes me want to put my fist through my monitor.

Liz said...

VERY well written Sunny. If you don't mind, I would really like to link to your post from my blog. I suck at writing and so often your posts are EXACTLY what I am thinking and feeling. People need to read this.

Sunny said...

go for it Liz.