Saturday, December 29, 2007

How about for one day YOU be a "hero?"

There's a new book out titled "Autism Heroes" that exalts the heroics of parents of children with autism. "Heroics" being pretty much defined as doing everything they can for their kid. As the mother of a child with autism I get a lot of "I could NEVER do what you do, Julie!" from people. I don't get it. If their child had autism, they'd stuff him in the garbage and walk away? They'd return him to the hospital as defective? They'd chain him in the basement and pretend he doesn't exist? Being a parent to a child who happens to have this disorder makes me and other parents in this situation heroic?

Hell, I could never do what I do, either. But I have to. My son is mine. I love him. I want the best I can do for him, like anyone else. There aren't a lot of other options.

I'm often exhausted and depressed. I'm not sure I CAN "do it" one more day. Friends and family could, for one day, stop exclaiming their praises over my heroics (or stop telling me what I should be doing) and give me a hand. Yes, people, you COULD do what I do!

Help someone out who has a situation that they didn't bargain for. Give them a break for one day -- or overnight.

Now THAT would be heroic.

Friday, December 21, 2007

Ranson Notes Recanted

The "Ransom Notes" have been removed, thank goodness. The psychiatric clinic in New York that was advertising for awareness got enough emails and phone calls from pissed-off parents, like myself, to re-think their message to the public. (See my previous blog)

Their main reasoning for pulling the inflammatory ads seems to be that their staff is spending too much time fielding the calls and emails. It was merely their intention to draw attention to the serious issue of untreated childhood psychological problems, but they unintentionally offended parents of children with these issues. They really didn't see it coming, which is an indication of how out-of-touch most of the medical community is with the reality of day-to-day life for families dealing with autism spectrum disorders and other psychological disorders.
A psychiatric clinic cannot -- at this time, anyway -- 'rescue' my son. They have medications to dispense. My son's psychiatrist, while a great guy and a very good doctor, relies heavily on MY input, rather than the other way around. He doesn't have many answers for us, other than trial-and-error on treating my son's most disruptive symptoms with medications. That's all modern psychiatry can offer families right now. Why offend us with bizarre "ransom notes" in the name of helping us?

I really hope they mean it what they say in the recant:

"Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority."

Saturday, December 15, 2007

Again, all awareness is not good

We have your son. We will make sure he will no longer
be able to care for himself or interact socially as long as he lives.
— Autism

This is one of the six “ransom notes” that make up a public service campaign by the New York University Child Study Center to raise awareness of what Dr. Harold S. Koplewicz, the center’s founder and director, called “the silent public health epidemic of children’s mental illness.” The shocking billboards and posters are plastered all over New York.

The idea is to wake up parents, to shake them out of their supposed denial, and get them to bring their children in for treatment. Who do they think is in this denial? I'm well aware, as are the vast majority of parents who have children with autism, that my child has the disorder. We don't need a billboard to tell us! In fact, my experience, and the experience of almost every other parent I've talked to (and I've talked to many) is that it's been THE PARENTS trying to convince the DOCTORS that something 'isn't right' with our babies, not the other way around.

What I'd like to know is this: is New York University going to "rescue" my son from his so-called "kidnapper?" There is no cure for autism. As a parent, I have tried everything to help my child, and a rude smack across the head, such as this campaign is, doesn't help me or my child.

What's the point, then, other than shock value, for this campaign? Why load another pile of despair and hopelessness on parents who already fight every single day to stay positive and optimistic? If you want to work on awareness, work on making society aware. I'm already well-aware, believe me.