Saturday, April 30, 2011

I Just Wanna Be OK...

I still hold my breath when issuing an imperative.

"Son," I said tonight, "go put your pajamas on, now." {wince}

You could feel my held breath during the beat. I do not ever take it for granted when he sweetly replies, like he did tonight, "OK."

I still get my share of resistance to things. What mom doesn't?! But it is a gift, a treasure, a milestone, a minor miracle, when my son, after practicing the word for more than THREE YEARS, responds to a direction by saying, "OK."

I turn away so I can enjoy a private smile. Yes, those two little letters mean a lot to me. But more than that? It's what he doesn't say. Those other two letters. Well, actually, if anyone could spell "NO" with more than two letters, my son could. Still can. But now it's almost rare to get, "NOOOOOOOOOOOOOOOOOOOOOOOOOOO!" I do not miss those days one bit.

If you are a parent or teacher or loved one of a child who has autism and "no" is the biggest part of their limited vocabulary, please do not give up hope. Please know that I almost did, and I would have been wrong if I'd accepted that a tirading, toy throwing, temper tantrum-ing single world vocabulary was the extent of my son's future interactions.

We have practiced the word, "OK" with him, modeled it for him, rehearsed, begged, reminded, scripted, and bribed it out of him. We had ABA for every single week day for two years. We have books about it. We praise the daylights out of it. Not because we want our son to be something he isn't, not because we don't love and adore and accept him, not because we wanted to spend our time with him issuing commands and forcing compliance, but because he always seemed so furious in his world of endless NOs. He seemed to say no to ease, to peace, to comfort, to being. He has come so far, through sensory work, through OT and PT and school and "helpers" and... love. He is still a fighter in the best sense of the word, but he has put down his gloves a bit, and he has made some room for ease, peace, comfort, being.

Today he watched Lilo and Stitch, and he started laughing his heart out. Our friend Decy said, "He sounds so happy." I felt my eyes widen. To hear that said about MY boy! My boy?! I confess, I pretended I hadn't completely heard her. I said, "What did you say?" I wanted more. She said it again. "He sounds so happy." This is not a sudden thing. Our Rooster has been gradually doing better, emotionally, step by tiny step, but it still thrills me to hear anything so radically different from back when I started writing this blog in 2008. My. Boy. Sounds. So. Happy.

If you can't imagine hearing that about your child, hang in there. I am rooting for you both. Be patient. Do what you think is best. Love. Take whatever tiny baby steps make your family feel comfortable. Or whatever giant steps. Just don't give up hope. OK? OK.

Wednesday, April 20, 2011

Can You Hear Me Now?

The other night, after an endless day, Peaches tried to stretch out bedtime. At least, I hope it was a ploy.

"Um, mama? You know how you said today I should just listen to the little voice inside me that tells me the right thing to do? Well, I don't hear that. I think sometimes my little voice tells me to make bad choices."

Glad it was dark, I bit my lip. Then, I tried this, "Peach, if you listen carefully, I know you will hear the other voice. It's inside you telling you the right thing to do. Such a sweet girl like you can do it, I know you can, if you just listen."

I pause for a long moment and then turn to go.

"Nope," she says. "Can't hear it."

Friends, I am beginning to get the impression that child needs her own blog all to herself. Alas.

Saturday, April 9, 2011

Um, Should I Really Tell You This?

Lately, I have some dramas or desires or plans that do not involve my children or autism.

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

Awareness is So Money

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.