The Meaning of Advocacy

One of the first, and in retrospect most important, lessons that Karen and I learned, way back when we first met Phyllis Kupperman, was “be Nate’s advocate.” We were new to the world of autism and hyperlexia, and, besides having to become amateur speech therapists and twice-weekly visitors to the Center for Speech and Language Disorders, now we had to become “advocates.” What did it mean?

No doubt, it means different things to different people. Perhaps some interpret it this way:

“Look, my child is no different from yours. Don’t call him/her autistic, don’t label him/her as someone with special needs.” That tack is usually accompanied by much yelling.

Or this:

“I’m sorry, I’m sorry. He/she doesn’t mean to be disruptive.” This is often part of a strategy that involves taking your child away from the scene of the incident, avoiding embarrassment the top priority.

Here’s what we did: always, always, make sure that Nate’s improvement was addressed first and foremost. I can recall the first school meeting in Lincolnshire, IL when labeling Nate autistic was put on the table. Some parents genuinely recoil at that label. It hurt, sure, but what did it matter if, by categorizing Nate as such, he would get the services and extra help he needed to succeed. We asked questions regarding privacy, and making sure his personal information was not fair game, and the answers were satisfactory.

Would we have changed our acceptance of the label if the answers weren’t good enough? Probably not, because what he received as a result of the autism tag was what he needed. Our damaged feelings were inconsequential compared to the big picture of helping Nate. We always saw ourselves as partners with the school in the grand cause that is Nate Katz; we were never adversaries.

I went through a transformation when Nate took, in effect, the same math course for three years straight. I was a solid math student and was upset that Nate was, except for a few units here and there, subjected to identical material in grades 6-8. The epiphany, my V-8 slap in the head moment, came unexpectedly, but it came. Nate’s stagnant math career was of no consequence to his overall development. It was a problem for me and another adjustment of expectations. I look back at that as an important moment of separating my needs from Nate’s

Even now, we are fighting the good fight. As a recent post noted, Nate has a new test reader at SUNY-Cobleskill. He got one bad grade and we’re unsure on the other. Nate puts a lot of effort into studying, but he may get anywhere from 0 to 100 (and has). All we care about is that he is given the best chance at showing his skills to the best of his ability. We’re always in the process of making that happen.

Look, everyone meets their challenges in different way. I’m not suggesting your way is wrong, and ours is right. You can only do what you’re capable of. Yet, at the core, every parent of an autistic child does share the common goal: do what’s right for their son/daughter and get the most out of them. Keeping that goal in the forefront and making sure all your actions, whether at school or socially, are aimed at achieving that goal, will lead you all to a better place, no matter what tactic you take.

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About Jeff Katz

Jeff Katz is Mayor of Cooperstown, the “Birthplace of Baseball” and home to the National Baseball Hall of Fame and Museum. His latest book, Split Season:1981 - Fernandomania, the Bronx Zoo, and the Strike that Saved Baseball, (Thomas Dunne Books, 2015), received national attention, with coverage appearing in The New York Times, Chicago Tribune, Sporting News and NPR’s Only a Game, among others. Katz appeared on ESPN’s Olbermann and The Sporting Life with Jeremy Schaap and MLB Network’s MLB Now, with Brian Kenny. Split Season: 1981 was a finalist for the 2016 Casey Award for Best Baseball Book of the Year.
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