Blogging for me is part chronicling some of the memorable or amazing steps in the lives of my kids, part remembering and part thinking out loud. Anyone who has spent a few minutes in conversation knows how funny and irritating that last part can be.
Sometimes my thinking out loud can even be useful.
This is one of those times that I suspect it will be mostly irritating.
With that warning out of the way, I want to rush headlong into thinking out loud about one of the things that I find divisive about the autism communities.
Not vaccines or cures, but I do have thoughts on those. Not about autistic vs living with autism either.
No, it’s about calling ourselves advocates.
My thought is that the job of parenting implies that we are going to advocate for our kids on the spectrum or our kids with special needs or our just-plain-no-modifier kids. However, being an advocate does not necessarily imply being a parent.
Maybe it’s that I am old enough to have parents that lived through the Depression or maybe it’s that my parents were of a dour flavour of protestant or maybe that my mother was a single mom in the 1960’s and ’70’s when it was less common–or maybe not of that matters.
What I know for certain is that as an advocate I would have to call myself unsuccessful. I have not had any influence whatsoever on reducing wait times for therapy, getting more funding for services or moving a single bureaucratic structure to move any faster than it wanted to. Nor have I been able to motivate media or policy makers.
I understand that people want to use the term “advocate” and some people have been very successful at caring for their kids and moving the yardstick for people seeking progress for autistic kids. Stuart Duncan and Shannon Rosa jump to mind as two great examples.
Last week when I read one of Stuart’s posts and he wrote about the toll that being an advocate was taking, my heart was aching for him. The bar was already set so high for him to just be a parent and then higher still that his family is living with autism and I admire him for both of those roles. Stuart is so much more than just an advocate because he is a parent.
To restate, as an advocate I would have to count myself as a failure in influencing the thought leaders and budget makers.
As a parent, though, I have been a little more successful. I have had a lot more smiles than I ever did when part of my paying work included being an advocate. I have seen all of my children do amazing things and accomplish wonderful feats, not because I was an advocate but because I am content that my best job title is parent.
Gingerheaddad 
I, also, am a bad advocate. I consider myself a parent first and foremost. My blog is not about informing or advising – it is just about our lives. I guess I could say that I am my child’s advocate – but I think that ALL parents are their child’s advocate – with or without special needs.
Like you, I am very content having ‘parent’ as my ‘job title’.
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Bad advocates, unite. I agree with you that all parents are their children’s advocate, along with cheerleader, spiritual counsel, emergency first responder, etc., etc.
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I’ve never found you to be a bad anything Angel 🙂
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There’s nothing wrong with just being a parent. There’s also nothing wrong with being a parent AND and an advocate. Nor is there anything wrong with just being an advocate.
Who told you that you ought to be both? Why did you listen to them? Why not make up your own mind?
Ok, the premise of this article is that you have made up your own mind. But your tone also suggests that you disapprove of those that choose both roles. Aren’t you perpetuating the division simply by commenting?
I’m just being a devil’s advocate here (pun intended). I have no dog in this race. 🙂
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Thank you, Chris, for being the devil’s, um, you know. I feel that advocating is part of parenting, whether a child is on the spectrum or not. I think the division isn’t one that parents have to make, because we are almost always doing it when our kids come up against bureaucracies. Even something as small as arguing for more playing time with a kid’s coach is advocating. I think of an advocate as someone who is not touched personally by an issue but is supportive of making a change, but that comes from my years in fundraising.
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As a parent it is your jod to advocate for your kids. It’s not a separate thing. So you say that your kid has autism well right there you have to stand up for your child throughout school and in other places. What makes you think that advocating for your kid isn’t part of parenting.
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Sara, I agree. I point out in the post that advocating is part of parenting. I refuse to think of myself as an advocate, because I am a parent.
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Jim, thanks for the great post… I haven’t replied yet because… well, I wrote a post about it, explaining why. LOL
Here it is: http://www.stuartduncan.name/autism/what-is-autism-advocacy-to-you/
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Stuart, thanks for the link. I should add it to my post. Your post was just brilliant.
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As a parent you have so many jobs! I think you’re doing an incredible job! 🙂
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Thank you. You make me blush, not least because I think I just kind of muddle through. We all have so many jobs and roles as parents and we need to be nimble because we have to switch roles so quickly.
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I admire your honesty Jim! Our role as a parent indeed comes first. Your post is a welcome reminder for me when feeling like I am getting no where with making a change in the Autism Community that surrounds me. We press forward in Faith, but it is important to me that I remain first and foremost with my top title as ‘a good parent’. Anything else, including a title as an ‘advocate’ must remain secondary for the sake of my angels:)
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I admire the work you do, Jayme. You are a terrific example of a person who advocates because you parent. Lorenzo couldn’t ask for a better one of either.
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