Great Expectations
Today at Support for Special Needs:I’m writing about what I’m feeling here because I think it might be almost as common among special needs parents as that early grieving process. When we buy into a Way That Things Shall Be, it can be hard to let that Way go. Harder than even we realize, because there are so few narratives on which we may depend, and when they disappear, blown away like morning fog, there’s not much in our reserves to take their place. The Way was important, and the Way didn’t work out. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 10, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Hunting Monsters at SXSW
Today at Support for Special Needs, for those attending SXSW this week and next:If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 3, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Help Wanted
Today at Support for Special Needs:She sees her future work life as an abstraction, probably because at her age, the future seems limitless. She believes that whatever she's going to do with her life is a choice that is firmly in her hands. But for Schuyler, and for kids like her, that future may not actually have that many options. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 24, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Schuyler's Brain
After Schuyler's most recent visit to her neurologist back in December, we were given a cd with images from her MRI. In what felt like a flashback to 1995, the cd wouldn't open on our Mac, much less the app that displays the images. We picked it up during the holiday break, so I couldn't take it to work and try it there. We'd already received the pertinent information from Schuyler's neurologist anyway, so there wasn't really anything to be learned from seeing the images. By the time the holidays were over, the cd sat on my desk, patiently waiting for me to remember to bring it in to the office with me.It ended up waiting ...
Source: Schuyler's Monster: The Blog - February 19, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Diversity in Language
Today at Support for Special Needs:As parents of children with disabilities, we are constantly looking for the word choices that reflect not just our kids’ reality, but also the dignity and the hope and the possibilities that we hold as a kind of sacred trust. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 17, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Monsters Who Smile
I'm sorry if you're getting tired of this story. I actually wrote this last week. One of the pitfalls of a weekly column, I guess. Anyway, today at Support for Special Needs:But being Schuyler’s father has also shown me, again and again with stark clarity, that there really are monsters in this world, and some of them smile pretty smiles and take your daughter by the hand if you let them, and God, do I hope I’m alert enough to know those monsters when I see them. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 10, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
You're worth what you're worth.
Today at Support for Special Needs:My fears for that future, and they are legion, have little to do with what Schuyler will be able to do, or what her worth to the world might be in measurable values. My fear is rooted squarely in those who hold her future success and those of her friends in their hands, and whether or not they truly understand the value of what that means. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 3, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Transitions
Today at Support for Special Needs:Special needs parents and their support professionals frequently talk about transitions. They are wildly important. It’s maybe the hardest part for a lot of our kids, and it’s the one that we know they can’t escape. The thing is, it’s the thing we can’t escape, either. Change is coming, as it always is. Sometimes stealthily as if on cat’s paws, but lately, more like a howling wind that drives everything before it. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 27, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Here Be Dragons
Today at Support for Special Needs:For the parents of special needs kids who have developmental and communication impediments to independently moving through the world or reporting the troubling things that happen to them, the map of our world is crowded with monsters and terrors and fears. We’d gladly take on all the dragons and the krakens of the ancient world instead. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 20, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Simple Story
Today, at Support for Special Needs:The thing I find sometimes is how much there is to learn in the simplified version she gives back. She doesn't take something complicated and dumb it down. Often, she distills it, tries to break it down to its most elemental parts. When she gets those parts right, it feels like a tiny triumph, not just for her but also for me. Schuyler teaches me to communicate, even as she works hard to learn those skills for herself. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 13, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
On Competency and Agency
One of the concepts you see referenced frequently in disability writing these days is to always presume competence. It's a straightforward enough principle, and in the world of disability, it goes back farther than you might think, back before most of us even think of disability advocacy being A Thing. Think of the story of Helen Keller and Anne Sullivan. Sullivan's success in helping Keller develop the means to communicate with the world hinged on one simple thing: the presumption that Helen Keller's problem came from not having a practical and efficient way to communicate. Introducing her to the construction of language ...
Source: Schuyler's Monster: The Blog - January 8, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
One Resolution
Today at Support for Special Needs:What I’m doing by not saying anything is a form of silent consent. I let a little piece of verbal poison go out into the world because I don’t want to have an awkward conversation with a stranger, or worse, with a friend or family member. I hold myself up as some kind of New & Improved Rob because I don’t say it anymore, but every time it goes past me unremarked upon, all I’m really doing is allowing someone else to say it for me. I feel like that might be a little worse. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 6, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
A Complicated Homecoming
I don't return home to Odessa very often. Probably not nearly enough, anyway. It's been almost three decades since I actually lived there. I left home a few weeks after I graduated from high school, back during the end of the oil boom and the beginning of some tough years for the place, and for my family. In the mid-80s, the oilfield economy was tanking, hard, and the publication of Friday Night Lights a few years later would train a spotlight on West Texas football and education and the community in a way that was ultimately good medicine but at the time probably felt a little like being kicked while they were down. My fa...
Source: Schuyler's Monster: The Blog - January 2, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
I will try.
At Support for Special Needs:I’m not sure I’d call any of these "resolutions". But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - December 31, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Christmas Eve Eve
Today at Support for Special Needs:I mentioned this last year, but one of the things I value the most about a site like this one is how we can come here and be weird. We can find others whose holidays are as atypical as our own, and other families whose traditions are as driven by circumstance as ours. We know the obstacles, and we know how much work has gone in and how much is still waiting in the future. And we understand, in ways we can't describe to typical families but don't need to describe to each other, how deeply satisfying the love we work for and nurture really can be. It's a hard love, and it's the very be...
Source: Schuyler's Monster: The Blog - December 23, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
