Insufficient Instrument
Today at Support for Special Needs:For a guy who's not too smart, I think I do a reasonably good job of navigating the chaos around me. And yet, it is in respect to the most important part of my world where I think I know the least. Schuyler has always been, and remains today, the central mystery of my life. I think I made peace with that years ago, mostly because it is in the journey to understand her mystery that I've grown the most as a person, and found my closest approximation to lasting happiness. I've accepted that as lucky as I am to have Schuyler in my life, I'm mostly not going to get her.It's beginning to occur ...
Source: Schuyler's Monster: The Blog - May 26, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
American Poison
You're probably reading this on Sunday or Monday ("Happy" Memorial Day seems like a weird thing to say), but I'm writing this on Saturday night, in the middle of the media coverage of another horrific mass killing in America. It's at that stage where we're just now getting enough information to begin to understand what happened, and the justified outrage is building up steam, but there's still a lot we don't know. Worse revelations are no doubt still to come. Even at this early stage, though, it feels like a quintessentially American story.I'm not going to get into the specifics of what happened. I'm not going to name the ...
Source: Schuyler's Monster: The Blog - May 25, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Thin Line Between Wrong and Wrong
Today at Support for Special Needs:But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - May 19, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
"...and my heart is closing like a fist."
Schuyler and I are at a quiet burger place. We're having a late lunch after working on a homework project most of the afternoon, and there are only a few other people here. The burgers are good, and they have wi-fi and milkshakes. She's on her iPad watching Netflix, and I'm on my laptop catching up on some work. It's not perfect, but it might be close.The doors open, and a high school cheerleading squad enters like a tsunami, followed by their parents and friends. The parents are almost comically loud, and the boys are posturing and preening with a forced casualness. The girls are energetic and interchangeable, matching un...
Source: Schuyler's Monster: The Blog - May 18, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Borrowed Happy
"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." - Stephen Chbosky, The Perks of Being a WallflowerThis is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.I've been thinking about happiness lately.(Because of privacy...
Source: Schuyler's Monster: The Blog - May 17, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Advocacy, with Heart
Today at Support for Special Needs:There's a balance to be struck, I imagine. We don't want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our ...
Source: Schuyler's Monster: The Blog - May 12, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
On Early Intervention
Today at Support for Special Needs:When Schuyler was born fourteen years ago, she was (perhaps irresponsibly) placed into the hands of two people who lacked even the most basic experience with a baby. To make matters worse, at least one of those people was an idiot. (SPOILER: It was me.) I shouldn't admit how many times I looked at Schuyler and simply said to myself, "Oh my god, I have a baby and she's still alive. This is one lucky damn baby." (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - May 5, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
This Is Only a Test
Today at Support for Special Needs:In Texas, our kids take the STAAR test, which replaces the TAKS test, which was probably preceded by the CRAAPS test and the BUUG test. I have no idea what STAAR stands for, and I refuse to go look. It stands for "The Test That Will Take Hours and Days of Actual Instruction Away From Your Kid, Stress Them Out In Ways You'll Probably Not Grasp Until They Go Into Therapy or Rehab or End Up on the News With Helicopters Circling Your House, and Provide Politicians With a Way to Sound Like They Care About Education But Most Assuredly Do Not." (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 28, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Stumbles
It was a rough week. I won't lie. It was rough for me, and it was even worse for Schuyler. One thing I can say for certain about this week, however, is that if bad days offer the chance for learning, I feel like we all had some graduate level education going on. I feel like we should be wearing those little flat hats and robes and jabbering in Latin.Most of all, we learned that the structures we come to depend on can be unreliable at best. We were reminded that in the end, we can depend on each other, and sometimes that's all.There are a lot of very individual stories I could tell about last week, but they wouldn't be of m...
Source: Schuyler's Monster: The Blog - April 27, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Things We Know
Today at Support for Special Needs:The challenging aspects of being the parent of a special needs kid aren’t always the things you don’t know, although believe me when I say those are bad ones, like "stay up late and start drinking early" bad ones. Sometimes a greater source of parental frustration comes from truly knowing your child, in a way that is simply impossible for a doctor or a teacher or even a family member, and having to work tirelessly to be taken seriously. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 14, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Exquisite Joy of Nothing
This week at Support for Special Needs:This week, we didn’t struggle to understand her, we didn’t have to manage seizures, and there were no bullies to deal with. The Internet wasn’t buzzing with an unusual amount of outrage, and despair felt far away. It was a week where nothing of particular note occurred in relation to Schuyler’s disability. For families of kids with special needs, this can be a rare treat. A week without an easy blog topic is itself worthy of note. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 8, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Long-Abandoned Path
Today at Support for Special Needs:Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 31, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Archipelago
Today at Support for Special Needs:We're already on islands, many of us, but not in a vacation wonderland kind of a way. Our islands aren't floating in a remote blue tropical sea. They exist in plain sight, in the middle of your towns and workplaces and schools. Most of our territories are invisible; you can barely see the fences unless you look closely. And most people don't look that closely. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 25, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Twenty-four years ago today
It's still complicated. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 24, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
A Genuine Advocate and a Frank Conversation at SXSW
Today at Support for Special Needs:I’d never heard anyone come out and admit that their company had been spooked by the internal divisions of the disability community and the enthusiasm with which we seem to embrace the concept of the circular firing squad. But it was also deeply depressing to be reminded that the world is watching. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 17, 2014 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
