Carousel
This morning, at Support for Special Needs:Schuyler made a neurotypical friend her age, and that friendship will grow, if it grows, the same way her recent failed relationship grew. It'll happen by text, through the power of words that Schuyler is beginning to well and truly make her own. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - July 1, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Schuyler's Season
Today, at Support for Special Needs:During the summer, Schuyler is less aware than ever of her disability, which is more than fine with me. Almost everyone she meets is a friend, not a therapist trying to measure some aspect of her skills through contrived friendship, or an evaluator trying to identify or construct phony limits to her capabilities. During the summer, Schuyler is meeting people at the pool, or at her summer baseball programs. Her new acquaintances are made to the sound of splashing and laughter and the croaking of cicadas, which we call "hot bugs" because they seem to be at their loudest when the air is thi...
Source: Schuyler's Monster: The Blog - June 24, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Radioactive
This morning at Support for Special NeedsWhen I write about the importance of true and authentic relationships with people with disabilities, this is part of that. Humor like this isn't funny unless you can dehumanize your target. There's no question about whether you'll get away with it if you understand that the vast majority of people who might hear you will believe down to their core that a human being with as much worth and value as themselves has been treated unfairly. In a world where that humanity is not just acknowledged but truly and deeply felt, this kind of behavior will be relegated to the fringe of society. I...
Source: Schuyler's Monster: The Blog - June 18, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Father's Day at the Huffington Post
The very cool folks at the Huffington Post asked me to contribute an essay for Father's Day, so here it is, "What I Know About Fatherhood Now That I Have a Teen With a Disability":In the midst of all my fretting and errors, Schuyler has quietly persevered, and found her own successes. With time, I've finally started to see how she might make her way through a rough and beautiful world.And I like to think I've learned a few things, albeit through trial and error and error and error.Happy Father's Day to all you dads out there, and to all of you who are doing the work of fathers. Our moment in the sun may be fleeting, but ma...
Source: Schuyler's Monster: The Blog - June 14, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Sea Change and Mr. Baseball
When I write about how truly effective disability advocacy requires entering into authentic relationships with the disabled, it helps to have some solid examples of what that might look like.Meet Cory Hahn.(Mark Boster, Los Angeles Times)Just a few years ago, Hahn had a future in baseball. As a high school player in California in 2010, he was selected as the state's Mr. Baseball, batting .411 and leading Mater Dei High School to a state title. He was drafted by the San Diego Padres in the 26th round, but turned down the selection in order to attend college at Arizona State.It was in his third game with the Sun Devils, in F...
Source: Schuyler's Monster: The Blog - June 12, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Becoming Superfluous
Today, at Support for Special Needs:I know now that Schuyler can make it without me, and probably even thrive. I understand in a way that has perhaps eluded me before now that if something were to happen to me, if I were to be run down by a train or crushed by an errant piece of some uninspected airliner falling from the sky, Schuyler would be taken care of. More importantly, she would be on the road to taking care of herself. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - June 10, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
On the Question of Humanity
Today at Support for Special Needs:Not every dehumanizing party sounds hateful. The most dangerous among them sound downright reasonable. They are the ones who stand most defiantly in the way. They are the ones who go to city council or school board meetings and with voices both calm and reasoned make the policies that weigh down our loved ones like chains, or make them invisible altogether. They are the ones who make services and education for the disabled sound like entitlements, or luxuries that we might be able to afford next year, perhaps. They are the ones who reject individual social responsibility in favor of commu...
Source: Schuyler's Monster: The Blog - June 3, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Conversations
Today at Support for Special Needs:There has been so much conversation, so many choices to be made, all focused on enabling Schuyler to have the opportunity to fully realize the potential of the technology that so many people worked so hard to provide to her. That technology has changed her life. The early years are crucial to language development. It was almost too late when she first started at the age of five, and we did what we had to do to give her that tool before the doors slammed shut for good, pride and principles be damned. I would do it all over again, except years earlier. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - May 27, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
She's waiting.
Schuyler's IEP Redux took place yesterday. Her previously unsatisfactory speech and language goals were revisited and the new plan for restoring Schuyler's AAC proficiency was worked out, at least on some level. How did it go? I'm not sure how to answer, honestly. The specific goals we wanted were added with a minimum of resistance, and some really good discussion took place that I think will lead to improvements next year. There's a big thing we're asking for that I don't think we're going to get, and it feels important enough that I really believe that without it, everything else might just fall apart, so I'm advocating ...
Source: Schuyler's Monster: The Blog - May 23, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Things That Matter
Today at Support for Special Needs:It's easy to get lost in the world in which we live. It's so easy to forget how quickly things can change. It's not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child's brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it's grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today's manageable monster may grow fierce a...
Source: Schuyler's Monster: The Blog - May 20, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
One Small Light
Today at Support for Special Needs:If you're here, you get it. You're almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn't small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I'm right, that sounds exactly familiar. Or you might say I'm full of crap. But you're probably never going to say "Oh, that never occurred to me." Because if you're in the club, there's very little that hasn't occurred to you, often in the middle of the ni...
Source: Schuyler's Monster: The Blog - May 13, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
No Heroic Measures
Before I take up the baton and add my perspective, I want to direct you to this essay at Sea Change Ripples, written by a good friend whose thinking on disability issues has both paralleled and influenced my own. This most recent essay is an important one, addressing the tendency of professionals who work with the disabled to receive hyperbolic accolades, and more importantly, to eventually believe their own hype. It's an important point, and I'd suggest that it also applies to parent advocates. And fancy pants authors.Hero. It's a word that gets thrown around rather freely, particularly in the disability community. You re...
Source: Schuyler's Monster: The Blog - May 8, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Tooth and Claw
Today at Support for Special Needs:Overall, it wasn't a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we'd resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.Schuyler's poem, recopied by memory as we took the photo sh...
Source: Schuyler's Monster: The Blog - May 6, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
GUEST POST: A Poem by Schuyler
(I was alone with no ones there!)The grass looks green and the sky looks blue but everything else looks grayThe pine tree looks monsters and the sea looks horses in the hillThe desert looks brown and it feel tiny and alone with no one there The mountains looks old and wise likes wizards with their mastersI feel tiny and alone with no one there in the dark cave.I feel super tiny in the deep way of the ocean.-- Schuyler Rummel-HudsonPhoto concept by Schuyler (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - May 2, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Field of Dreams
Today, over at Support for Special Needs:It's so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It's easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors' names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn't right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 29, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
