Thursday, November 14, 2013

The Truth, the Whole Truth, and Nothing But the Truth

When I read Suzanne Wright's blast of autism on Veteran's Day, I was smacked in the face. I was so stunned, furious, and despondent that I haven't been sure what to say. Others of my tribe have been far more on the ball, being able to twist their emotions into words so beautifully, so clearly, so... quickly. All I could do is look at my son and cry.

Yes, we are coming out of one of those rough patches. The ones described by Ms. Wright, where you lay awake at night- sometimes sleeping in your livingroom- listening, waiting, your knuckles white and your mind racing. Will he try to get out tonight? Is he safe? What is going on in his head How do I help him? Why can't I seem to get anyone else to understand what he needs?

And for a parent, that can quickly devolve into that negative self-talk that Joey wields so well.

We didn't need any more of it, thank you very much.

See, Joey is not lost. He isn't some other person, stolen away from us by autism. Autism is part of who Joey is. There is no Joey without autism. He would be a completely different human being than the human being he is now.

Joey is not a tragedy. He needs help, he needs support, he needs love. You know... like the rest of us. The difference is that he needs supports in a different way than most people do, so we can see it- it is more obvious that he has needs, because they aren't readily met. Like so often in our society, others baulk when we move beyond the one-size-fits-all, when we have to individualize and think about what we do and say. Being an academic, I see this problem all the time. It is the problem I tell my students to shy away from. Not all paleolithic painting was made for the same reasons- there is a span of thousands of miles and thousands of years between sites. There can even be a stretch of thousands of years at a single site. Saying all the paintings were done according to one theory is just laziness. Plain and simple.

To think all people learn the same way, think the same way, and are motivated by the same things is laziness. Yes, there is commonality between human experience; but that should not discount the individuality of the human experience.

Our family is not merely existing. We are a growing, loving, living family. In fact, we learn so much from each other, I would venture that having Joey as part of our family has taught us even more than most of those "normal" families. Or perhaps we have just learned different things. We explore the idea of being human, the joys of living and breathing and eating and working in new ways, different ways, every single day.

Yes, we know families whose children are more disabled by autism than Joey. They aren't just treading water, either. Their experience is different from other families you and I may know, but that doesn't make their experience somehow less.

We anticipate Joey's next move, moment-to-moment. I have trouble working, because I have to be ready in case Joey needs me. This is not usual among autism families. But I do not wait in despair. I wait, wondering how to help, preparing the tools I need to help- not just Joey, but also those who work with Joey, who are trying hard to learn how to help him and support him in new and effective ways.

Do I get depressed? Sure I do. Does Joey get depressed? You betcha. The mental health system in this country is in shambles, which really doesn't help, either. But that's not an autism problem. That's a society problem. The tragedy isn't that people suffer- that's life. Just ask the Buddha. Been going on since time immemorial. The tragedy is the reluctant of people to move their minds and be creative, and think of others. The problem is Theory of Mind- and it is not the autistics that are having trouble thinking others may be thinking their own thoughts, having their own feelings, and needing their own supports and ideas. It seems to be everybody else having this problem. Funny that.

Do I think something needs to be done to help? That things need to change? That policy needs to be reworked and rethought, so that it is easier and more accepted by society to help Joey and his friends? Sure I do. I think it insane that insurance stops autism coverage at age 7, as if autism came to a screeching halt and that there was nothing more you could do if they are still autistic at age 8. I think it crazy that schools are not properly funded to provide free and appropriate education to EVERYONE, including Joey, yet we seem to be able to spit out money for tanks the army doesn't even use or want.

When Joey was very small, and first diagnosed, I received a letter from Autism Speaks. It was a fundraising letter, a request for money, with an anecdote of a father with an autistic son. I will never forget it. In the end of the anecdote, about putting his son to bed, the child dies in his sleep. I. Freaked. Out. I called the doctor who had just diagnosed Joey in a blind panic. Nobody said this could kill him, I cried. Nobody said anything like this could happen. Ohnoohnoohnoohnononononono....

And that doctor got back to me almost immediately. The child in the letter died of reasons other than autism. Because kids with autism are also human like the rest of us, they can have other health conditions, too. Some of those conditions can be, unfortunately, fatal, and yet have nothing to do with autism. No need to panic. Joey wasn't going to just stop breathing in the middle of the night because of autism.

I remember it for two reasons. First, I will never give a dime to Autism Speaks. They are trying to panic people into giving them money, and they don't even use that money to help people with autism. They systematically ignore autistic people, such as my Joey, and pour money into research of things such as causes and cures. If you are into those things, I would still not give your money to Autism Speaks, simply because they are holding you hostage, emotionally abusing you, to get your money. Emotionally abusing people is wrong. Period. Spreading panic for raising money is despicable.

Two, it was a reminder that not every little thing is an autism thing. Pervasive as it is, Joey is still a human being, and other things can happen, too. He gets colds. He has growing pains. He might even get the flu. Our hyper-vigilance may bring these things to light more often, or faster, than another child or family, but that doesn't mean they are connected with his autism. That is the Truth.

Experiences differ. We have out good days and bad days. We have our good weeks, good months; bad weeks, bad months. You know, like everybody else. We believe we shouldn't have to fight tooth and nail to get society to support Joey and help him be a happy, productive citizen, just as they help everybody else, just in a different way. And I do think we have a social emergency on out hands, because people are too lazy, ignorant, and selfish to change things and help others. However, I can certainly craft a message without a national plan.

Treat others as you would want to be treated.

Why is that so hard?

1 comment:

Autism is Communicating said...

Dear Joeymom
Thank you for sharing information, your experiences and especially your feelings so honestly. I identify very strongly with much of what you have shared. I have used the quotation from Albert Einstein on my Blog too. Your Blog is so rich with information, I look forward to re-visiting. I wish Joey and the Joey Team great success and joy.