The ASD recovery six-month review continues this evening. I’m posting twice today. I’m posting right now because Adrian feels depressed. We’re having the less-than-fabulous week I wrote about last night, and then this morning he read a father’s Wall Street Journal piece about a 15-year-old on the spectrum. The article reflects the grieve-for-the-child-you-don’t-have, celebrate-the-child-you-do-have, learn-from-difference perspective I discussed in my very first post.
Adrian emailed me the article. (In the event you’re reading between the lines, yes, it’s Labor Day, and we’re both working—lawyers to the core. Martin is out playing with my mother.) I read it and promptly replied to Adrian: “No. [Expletive] that. I’m not doing one iota of grieving until I have exhausted every avenue for overcoming ASD. No more articles like that, please.”
I refuse to grieve. I refuse to accept. I refuse to live with autism. I honor and adore Martin for who he is, at every step of this journey. But I refuse to stop trying to change him.
These words probably come across as haughty. It looks like I am suggesting that I—that we, all of us soldiers who believe we will recover our children, all the conquistadors who already recovered their children—have found a better way to deal with autism. Believe my assurance that I am a million miles from haughty about recovering Martin. I am uncertain, wobble-footed, and terrified about whether we will reach our goal. I wonder whether we are being taken on a long, expensive ride designed to exploit the hopes of desperate parents. This entire experience has humbled me, and Adrian, like nothing else. We have one child. We intended him to be perfect. Even when we recover Martin, he will be behind his peers. He’s lost so much time living alone in Martin-Land, under-communicative, distanced from us and other children.
I speak in absolutes because, from my perspective, acceptance is a dangerous slope. Each step toward reconciling myself to Martin’s autism is a step away from the unwavering determination needed to see this recovery process to its end, wherever that may be.
This Wall Street Journal article that depressed Adrian is, ironically, exactly the kick in the pants I needed this week. Reading it dropped that old 1990s Chumbawamba song Tubthumping into my head. You know the one: “I get knocked down, but I get up again. You’re never gonna keep me down.” Cheesy? Yes. Uncomfortably catchy? Maybe. A little shot of adrenaline when you need something to keep you going? Sure can be.
I’m guilty of various musical mantras these days. Adrian, a classical music fan, wonders why I’ve asked to hear Beethoven’s Ninth Symphony in the car lately. He thinks I like the beginning of the fourth movement, the main portion of Schiller’s Ode to Joy that everyone knows. What I really want is a later, less-popular chorus of the Ode, this one: “Froh, wie seine Sonnen fliegen / Durch des Himmels prächt’gen Plan, / Laufet, Brüder, eure Bahn, / Freudig, wie ein Held zum Siegen.” That means, “Happy, as his suns fly / Through heaven’s magnificent plain / Run, brothers, your way / Joyful, as a hero to the victory.”
Freudig, wie ein Held zum Siegen. Joyful, as a hero to the victory.
I will never stop. Chumbawamba, Friedrich Schiller. And this hero to the victory.
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I think I agree with the concept that we should all celebrate the child we have but I agree with you that concept of grieving for child we don’t have is a lot of crap. Also becuse we love the child we have doesn’t mean we shouldn’t continue to work with them to help them develop and be able to navigate this world.
Thanks! I’m not going to say that “grieving” never has it’s place. But I will say that it isn’t something I’m willing to do—not if I can change the circumstances that seem to require it.
The author of that Wall Street Journal piece later wrote this response to a question about “grieving” versus celebrating. I enjoyed reading this much more, though it still isn’t my approach: http://parenting.blogs.nytimes.com/2011/09/07/autism-one-parent-to-another/.