What she needs
I haven ’t posted over here in a while, not exclusively. I’ve been engaged in a more professional weekly blogging gig atSupport for Special Needs, and I ’ll be back over there next week. This has been a little two week hiatus, albeit an unplanned one. I try not to get too insanely personal or profane over there, and in some ways a slightly more measured tone is probably good for me. When I’m over here, there’s no telling what I might say(balls), after all. I guess this has just sort of become my personal little sandbox now, and that ’s kind of nice. (Asshole! Tits!)I guess the primary reason I ’ve taken a cou...
Source: Schuyler's Monster: The Blog - May 13, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Safe Spaces
This week atSupport for Special Needs:Excerpt: Safe spaces seem antithetical in some ways to the idea of eventual independence, but the truth is, we all need our supports. It ’s different for kids like Schuyler as they grow out of childhood, of course. Her independent life is probably always going to come with an asterisk, and the thing I’ve been working on lately, with a good deal of success, is being okay with that. Schuyler requires safe spaces, but they’re not fake places, nor are they segregated or isolated. And within those tended gardens, I think astonishing things are going to grow. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 27, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
I think I ’ve got a quarter if they need one.
Today atSupport for Special Needs:Excerpt: Weird? How are we measuring “weird”? What does “weird” look like for someone like Schuyler? Or for anyone else? I mean, we spend weekends driving around looking for invisible monsters to catch with our phones. Our threshold for weird might not necessarily line up with the purveyors of this particular behavioral invento ry. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 19, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Monster Island
Today atSupport for Special Needs:Excerpt: I ’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusia stically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach and looked hard ...
Source: Schuyler's Monster: The Blog - April 6, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
We've met before.
Today atSupport for Special Needs:Excerpt: Those of us raising our kids in public school environments have a pretty good idea of what de minimis really looked like in its worst case scenarios. We ’ve subsisted on the scraps that fall from the educational table. For the Supreme Court to now compel public schools to give our kids the opportunity to make meaningful, substantial and “appropriately ambitious” progress? That has to potential to change our lives and the futures of our kids. W e’ll deal with the private school tuition issue later. (Private schools mostly don’t want our kids anyway. That’s a very u...
Source: Schuyler's Monster: The Blog - March 29, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Seventy-five Percent Solution
Today atSupport for Special Needs:Excerpt: For Schuyler specifically, and for no doubt a great many of her peers, having the ability to pass for neurotypical in surface-level social interactions has probably given her an ambitious view of what her future could look like. If she can pass 75% of the time, that ’s probably enough to convince her that she could take on a life of total independence. And that’s great, but it’s also a problem, because that other 25% is where heartbreak lives. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 29, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Inclusion is a work in progress
Today atSupport for Special Needs:Excerpt: So what do our kids need from an inclusive society, before we even consider their classroom environment? We could start with patience. And along with that, opportunity, in employment and independent living and carving out those places where my daughter Schuyler and people like her can develop their talents and use them. As a society, we ’ve built this structure that values contribution, but in a very limited scope. “What do you do?” We hear that question and we know what it means. “How do you produce capital? How do you feed the machine?” And that’s not a very use...
Source: Schuyler's Monster: The Blog - March 8, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Spaces for the Hard Stuff
This week atSupport for Special Needs:Excerpt: Schuyler continues to build a world around herself, and sometimes that means making space for the monsters and the earthquakes and the hidden traps that wait to spring out and destroy the careless. As a parent, it ’s tempting to try to soothe the world’s edges, but of course that’s counterproductive, particularly with a seventeen year-old, even one as different as Schuyler. She sees the grief of others and she tries to take it on herself, partly because she is literally the most empathetic person I’ve ever known, but also, I think perhaps she’s trying it on a li...
Source: Schuyler's Monster: The Blog - March 1, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Persistence of Little Fish
Today atSupport for Special Needs:Excerpt: When I wrote about the little fish that quietly eat our kids up while we ’re busy watching for sharks, I had no idea how many little fish were going to spawn in the coming years, or how sharp their teeth would become. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 22, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
From the bottom of the sea
Today atSupport for Special Needs:Excerpt: Schuyler ' s world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn ' t quite the same as that in which the rest of us live. She ' s got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there ' ll be no shipwreck this time. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 1, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
This is why.
Today atSupport for Special Needs:Excerpt: Schuyler was surrounded and engulfed and protected by a sea of women, and she understood, I think maybe for the first time, just how large her tribe could be. As she grows older, Schuyler ' s people becomes a more inclusive group, more intersectional. She took a big step at the march. Her disability advocacy took on more feminism that she ' d felt or shown before. Her world grew bigger, and with it her protest and her advocacy. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 24, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Exploring Worlds Both Dark and Lovely
Today atSupport for Special Needs:Excerpt: In taking my own focus inward to her more immediate world and trying to help as best I can, I feel like maybe I can recapture my own sense of autonomous self. I can ' t solve the Big Thing, but I can tell her what it was like when I was seventeen and trying to figure out if love was a thing for me. I can tell her what I got wrong, which weirdly seems to give her comfort. I have value as a cautionary tale, I suppose, which is true of my adult, parenting self as well. So many times, I feel like my fatherly approach to the walls that stand in her way is to keep smashing my face ...
Source: Schuyler's Monster: The Blog - January 18, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Denial
Today atSupport for Special Needs:Excerpt: There are two kinds of deniers. There are the kind that are just goofy, like moon landing deniers. They ' re not hurting anyone, they ' re just being kooks, God bless ' em. And then there ' s the other kind. September 11th was an inside job, they say. Sandy Hook was a hoax. The Holocaust never happened. Donald Trump wasn ' t mocking people with disabilities. These deniers aren ' t just trying to change the narrative to fit whatever their ideology might be. They are erasing people, they are taking the struggles and the particulars of the lives of vulnerable people or people wh...
Source: Schuyler's Monster: The Blog - January 11, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Desensitized
Today atSupport for Special Needs:Excerpt: I recently read an article that posed a question that honestly hadn ' t occurred to me before. Can the perhaps inevitable hyper-vigilance that comes from parenting a child with a disability result in (or manifest as a symptom of) Post-Traumatic Stress Disorder? I ' m mildly surprised that I ' d never thought of it in those terms, since the obvious answer is yes, of course it can. And the question is more complicated because for parents of kids with disabilities, hyper-vigilance isn ' t necessarily an inappropriate response. Terms like " hyper-vigilance " and " helicopter pare...
Source: Schuyler's Monster: The Blog - January 3, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
" At least I think that's so... "
Today atSupport for Special Needs:Excerpt: I ' m not going to try to pretend I ' m hopeful, or that I believe the inherent goodness of my fellow citizens of the world is going to be our salvation. Maybe I should. Perhaps the first step to making it rain is seeding the clouds, I don ' t know. All I know for sure is that if 2017 is going to be survivable, if we ' re all going to get out of this intact and not epically broken, it ' s going to be because we did two things. Two things, just two, that ' s what I believe is necessary. They ' re easy, and they ' re hard. We need to take care of ourselves. And we need to take ...
Source: Schuyler's Monster: The Blog - December 27, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
