To my Heart, at Seventeen
Today atSupport for Special Needs:Excerpt: You know the truth, which is something we ' ve always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You ' ve simply refused to accept those limitations as concrete. You ' ve shamed those of us who ' ve tried at various times to define the limits of the person who you can become. For that above everything else, I ' m proud of you, heartburstingly so. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - December 20, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Value of Protest
Today atSupport for Special Needs:Excerpt: Protest forms special needs parents into people we would not otherwise be, and sometimes honestly never wanted to be. We become accustomed to advocacy, to stepping up when doing so makes things weird for everyone else. We learn not to care about the awkwardness, because our protest is God ' s work, it ' s in the service of the thing that we do that matters the most, the building of an equitable place for our children to operate. Others may care, others may love our kids and want the best for them, but no one else bears the responsibility to get things right like we do. ...
Source: Schuyler's Monster: The Blog - December 15, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The evolution of the dad hat
Today atSupport for Special Needs:Excerpt: The world of a teenaged girl with a disability is complex, in ways that aren ' t cute or sitcom-ready. We ' ve discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It ' s terrifying as a father; it ' s more terrifying for a young woman with a disability, and Schuyler is old enough to understand what ' s going on now, and what ' s at stake. Ten years ago, she was worried about werewolves. That ' s not what ' s waiting for her now, though. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 30, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Thanksgiving 2016
Today atSupport for Special Needs:Excerpt: Through it all, Schuyler doesn ' t spend a lot of time reflecting on the hard stuff, certainly much less than her moping, sad-sack father does. She sees a world that she doesn ' t entirely understand, and she grabs at it, claws at it for the riches it hides from her. She adores her friends, even when their behavior baffles her. She trusts in people, right up to the moment they let her down, and then a bit more after that. Schuyler loves her family, and that includes her godparents and the people she has made a family space for in her heart, with a depth and unashamed loudness...
Source: Schuyler's Monster: The Blog - November 22, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The next day, and the next
Today atSupport for Special Needs:Excerpt: But the days roll past, and the Big Scary Thing becomes more and more background as the Many Small Monsters continue their work. We don ' t make peace with it, because when we close our eyes, it ' s always there. ( " Ah, I can ' t remember! " cue laughter...) But we push it back as best we can, because the life he ' s mocking is a hard life, and it ' s hard and time consuming no matter who ' s the president. Our monsters aren ' t all that concerned with politics. Our devils don ' t vote. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 16, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The New Danger of Difference
Today atSupport for Special Needs:Excerpt: When Schuyler gets up tomorrow and faces her weary and deeply disheartened father, she will be told that what ' s wrong with America isn ' t those like her who are different, or who insist on their humanity without limitations. What ' s wrong with America doesn ' t belong to her. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 8, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
A Simpler World
Today atSupport for Special Needs:Excerpt: I hate this election season, like I hate anything that I find difficulty in explaining to Schuyler not because it ’s complex, but because it’s just kind of bad. I feel like every time she hears me explain why a person running for president would lie or mock someone who’s different or say gross things, it dents her a little. Every realization that the world can be awful leaves a little scuff. I hate trying to make sense out of a nationally known comedian going on television and using hate speech to tell the world that she and her friends aren’t fully human. I hate havi...
Source: Schuyler's Monster: The Blog - November 1, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Two Brains
Today atSupport for Special Needs:Excerpt: I love Schuyler ' s brain, which might seem like an odd thing to say, given her own uneasy relationship with it. Schuyler ' s brain isn ' t like yours or mine, or anyone else ' s. It ' s broken, dramatically so, but that ' s not even close to the main point. The story of Schuyler ' s brain isn ' t that it ' s broken, but rather the extraordinary things she ' s accomplished with it regardless. Schuyler walks and dances and sings, and she laughs three distinct different laughs, including the one that I love most, the one I call her troublemaker laugh. Schuyler plays percussion ...
Source: Schuyler's Monster: The Blog - October 17, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Small expeditions
Today atSupport for Special Needs:Excerpt: Years from now, I hope we see these small expeditions as the beginning of Schuyler ' s true adventure, the one she takes on by herself, in a world that may be as unprepared for her as she is for it, but which will be hers for the taking nevertheless. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - October 4, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Limits
Today atSupport for Special Needs:Excerpt: I ' ve written many times about my duty as Schuyler ' s parent to be an overbeliever for her. I still think that ' s true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler ' s capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in h...
Source: Schuyler's Monster: The Blog - September 27, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Check your local listings, and hold your breath
Today atSupport for Special Needs:Excerpt: I feel like there ' s been a subtle shift in how people with disabilities are perceived in the popular media. I think I heard more about the Paralympics in the media this year than ever before, although still not enough when you consider the extraordinary work the athletes put in. On-screen portrays of people with disabilities are becoming less of a big deal, although again, there ' s a lot of distance left to cover. And the notorious " R Word " seems to be slowly transforming into, if not a taboo word, at least one mostly perceived as being used and defended by low class per...
Source: Schuyler's Monster: The Blog - September 20, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Toll
Today atSupport for Special Needs:Excerpt: Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid ' s childhood provides until it very much doesn ' t. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But ...
Source: Schuyler's Monster: The Blog - September 13, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The invisible monsters who walk among us
Today atSupport for Special Needs:Excerpt: Everyone cry out, because such a statement demands outcry. Ann Coulter stands proudly and feeds off of us, a vampire hungry for hate and sorrow and lights and cameras. But we stand up and we push back, because " standard retard " doesn ' t get to flutter out into the air without being swatted at. It doesn ' t do any good to protest, but it feels evil not to, so we speak up and then we turn back to our lives, our difficult but rewarding lives. Ann Coulter may be rich and she may be famous, but not one of us in the disability community would trade places with her, not for a mom...
Source: Schuyler's Monster: The Blog - August 29, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Junior
This week, atSupport for Special Needs:Excerpt: In years past, her first day of school nerves were pretty epic. This year, it wasn ' t such a big deal. She got dressed in the outfit she ' d been planning for weeks, with her hair newly dyed in a fantastic purple that really has to been seen to be truly appreciated. We sat outside waiting for her bus, and right before it got there, we fired up Pok émon Go on our devices to discover that a Pikachu was standing next to us. If you play the game, you probably understand what a big deal that was, having him standing right there mere feet outside our doorway. (Just go with i...
Source: Schuyler's Monster: The Blog - August 23, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Back to You-Know-Where
Today atSupport for Special Needs:Excerpt: Our big plans for the new school year don ' t always work out, and sometimes they REALLY don ' t (hoo boy, let ' s swap some stories!), but what you learn after a while is that it ' s the small things that sort of anchor the tent in the wind. It ' s doing that first walk-through where your kid maybe finds the anchor points in the building where they can get their bearings, and you get the sense that perhaps your kid won ' t get lost on the first day, or at least not on the second. It ' s that moment when you see another kid greet yours like maybe they might be friends, ...
Source: Schuyler's Monster: The Blog - August 16, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
