Saturday, April 30, 2011
Wednesday, April 20, 2011
Saturday, April 9, 2011
Do you have any idea how significant that seems to me?
Whether it makes me feel guilty or giddy, selfish or lucky, or like it's a sign of progress or coming unglued, I marvel nonetheless.
You see, it's like saying, "Sometimes I forget my name." No, not exactly. Maybe it's like saying, "For a minute I thought it was a decade ago." No, not that either. Maybe it's like breathing for the first time in a record period of time. No, maybe there is just no way to say it but to say this:
It is really WEIRD when lately I sometimes find the energy in my life consumed by things other than raising my children, and how autism fits into that picture. It kind of has me all inarticulate and gaping. I am trying to figure out what to make of it.
Oh, there is PLENTY about autism keeping us busy. I mean, c'mon, it's a month til IEP. We're knee deep in decisions, debates, choices, therapies, social skills, birthdays, and facing some medical stuff for the boy Rooster that I don't feel like writing about just yet.
But sometimes there is room to think about my career. My marriage. Aging. Maybe getting the bathroom finally painted. Considering a tad bit of travel, to see family. Some of this stuff is also hard, and some of this stuff is nice. It all feels unfamiliar, and like the life of someone else.
To be honest, I am scared to publish this post.
Saturday, April 2, 2011
As the calendar turns to the month of autism awareness, it also turns to tax time in an era of budget woes and governmental quagmire.
I feel like I’m in a Tilt-a-Whirl. All around me, autism awareness advocates struggle valiantly to promote inclusivity, empathy, awareness, community. And all around me, bureaucrats fight over the failing economy, especially about who should pay for it, which is almost always someone “else.” People are in their own frenzy of fears, and every important issue in our country – from health care to education to wars to taxes -- seems rife with divisiveness and antagonism. Dizzy, I have held onto the nearest wall, immobilized, waiting for my equilibrium, but now I have something to say. It might be a jumble, it might mix some metaphors and take broad strokes and combine disparate topics, but amid the chaos, there is a simple point: It’s time for us to take care of our country.
And you know what? Taking care of autism IS part of taking care of our country.
Let’s say you don’t care a bit about autism, and even less still about inclusivity, empathy, awareness or community. Fine. Let’s say instead you care only about money, capitalism, and American corporate success. Fine, fair enough. Here is a concept I think you will understand, pertaining to education, health care, and disability services:
You can pay big now, or you can pay huge later.
You can pay high costs for services for children, or astronomical costs for lifetime services.
Or forget about special needs for a second. You can invest in schools, regardless of whether you have kids or even like them, or you can pour much bigger sums of money into such sinkholes as prisons. Don’t like property taxes going to the public schools you don’t use? Would you prefer them locking up the uneducated masses that you fail to rehabilitate? Would you prefer increased crime and drug use? And when I say pay now or pay more later, the later is not a generation away… the later is getting sooner and sooner as the size of our neglect grows and our past transgressions come due presently.
Hey, if you don’t know or love someone with a developmental disability, I get why you might resent “your tax dollars” going to serve “them.” I don’t need to try to reach your heart, really, because I can talk to you where you live, in your wallet. I want you to think about the twelve-year-old college student well on track to win some of the world’s highest prizes for his genius in math and his contributions to society’s understanding of advanced physics theories you and I are not likely to grasp. Have you seen the press coverage of this boy? I want you to imagine his parents had not had access to any services when, at age 2, that child received a diagnosis of autism. They thought he might never communicate and participate in the world around him. Can you please calculate the difference between what that child will likely now contribute to society, and what he would have cost “American tax payers” had he had to live in an institution? I’m talking dollars and sense here, people, and no, that is not a typo. What about the comparison between what that boy might contribute to society and what you and I might have to offer? Is he more or less worthy than you are? Is he more or less an “investment” in America’s future than I am? If you can quantify those things, I hope you will explain how. Well, for my money, it doesn't work like that, not one bit. But, for anyone out there who simply has to measure things, I will try to make things add up.
Simply put, people invested in that boy when he needed it, and now, his future tax contributions will likely contribute to taking care of us when we are the vulnerable ones. I wonder how he and his generation (currently 1 out of about 150 of which have autism) will feel about taking care of the elderly and infirm?
It’s autism awareness month. I wear blue not because Autism Speaks necessarily speaks for me or my family, or because I’ve ever been much of a joiner, but simply because I feel less lonely when I, as an autism parent, connect with community. But you don’t have to be interested in being part of my community to realize that our country must support education, health care, and services for all of our most vulnerable members, including those with disabilities. You just have to understand basic principles that tell us not to be penny-wise and pound-foolish.
That isn’t really how I roll, to be honest -- I think you should care about protecting vulnerable citizens not because they might or might not turn out to disprove Einstein’s theories, but because they are human beings, and we are all one big human family. But if you have to make it about money, then maybe that’s just your own vulnerable special need, and I’m willing to look past it to help you learn, because we all need and deserve some help and inclusion in this life.