A world diminished by what it cannot see
Today at Support for Special Needs:Excerpt: The value of human life isn't defined by the perfection of the human form or how advanced the intellect and its accompanying understanding of a complex world. That's a powerful realization. In a society that places such a high but narrow value on measuring our worth by our productivity, embracing the inherent human value of even the most impaired person is a revelatory act of social defiance, and perhaps a genuine spiritual awakening. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 11, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
The Inevitable Sorrow of Passing
Today at Support for Special Needs:Excerpt: On a good day, especially when she doesn't have to speak too much, Schuyler passes pretty successfully. There are a few outward signs of her polymicrogyria, but she masks them pretty skillfully. She carries an iPad with her at all times, of course, but these days, that doesn't exactly distinguish her from any other teenager. (Insert curmudgeonly, "get the hell off my lawn" statement here.) Like a lot of kids with intellectual disabilities, she worries about people noticing her difference and judging her for them. For Schuyler, passing is a very deliberate choice. I try to en...
Source: Schuyler's Monster: The Blog - April 3, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Eye of the Storm
This week at Support for Special Needs:Excerpt: This week has provided a short respite, a brief interlude in the eye of the hurricane. We've been doing this now for a long time, officially for almost thirteen years but of course a little longer than that. I've learned a lot in that time, usually the hard way, but there's a lesson I keep coming back to. Hold on to the quiet interludes, the ones that feel carefree even if they're simply pauses. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 27, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
A Hard, Correct Answer
Today at Support for Special Needs:Excerpt: When we talk about accessibility and inclusion, those aren't just buzzwords. And they're not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren't any easy answers. Transportation may be the most straightforward, but it's also pretty daunting. It's easy to forget about the simple act of getting from here to there when we'r...
Source: Schuyler's Monster: The Blog - March 20, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Building an Adult
Today at Support for Special Needs:Excerpt: Schuyler is grappling with emotions that are new for her, and with the idea of relationships and a family of her own one day. It's all been so fantastical until now, and her ideas of the kind of person she might be in a relationship with are still very fluid and mostly kept to herself. ("I think I might like girls," she said timidly at one point in the interview. Sorry, grandparents.) Last week, at my aunt's funeral, Schuyler's natural sensitivity and empathy overwhelmed her a little. She wept openly for someone she's essentially never met, because she looked around and saw ...
Source: Schuyler's Monster: The Blog - March 13, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Uncivil Discource
Today at Support for Special Needs:Excerpt: There are a lot of reasons I'm already disgusted and exhausted by this election season. If you want to understand, spend about twenty minutes on Facebook, or a minute and a half watching one of the debates. But perhaps the most disheartening for me right now is the intersection of politics and that old familiar ugliness, our society's propensity for using our most vulnerable population so cheaply and with so little regard for their basic humanity. I made a promise to never give my silent consent to dehumanizing our loved ones by saying nothing in the moment, and I intend to ...
Source: Schuyler's Monster: The Blog - March 7, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
" ...the song woke his heart into the darkness and sadness of joy... "
< div class= " separator " style= " clear: both; text-align: center; " > < /div > There ' s a quote that seems to originate from a number of sources, which isn ' t surprising since it ' s not terribly original. But it is terribly true. < br / > < br / > < i > " You may be done with the past, but the past isn ' t done with you. " < /i > < br / > < br / > I returned to West Texas this week for that most compelling of homecoming reasons, a funeral. My Aunt Kay died last week. She was married to my father ' s brother, but she was also my mother ' s childhood friend. The four of them were the closest of friends, and that close...
Source: Schuyler's Monster: The Blog - March 3, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
"...the song woke his heart into the darkness and sadness of joy..."
There's a quote that seems to originate from a number of sources, which isn't surprising since it's not terribly original. But it is terribly true."You may be done with the past, but the past isn't done with you."I returned to West Texas this week for that most compelling of homecoming reasons, a funeral. My Aunt Kay died last week. She was married to my father's brother, but she was also my mother's childhood friend. The four of them were the closest of friends, and that closeness applied to all of the cousins as well. We functioned like an immediate family; all of my childhood memories include my cousin/best friend, as w...
Source: Schuyler's Monster: The Blog - March 3, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
An Undiscovered Country
Today at Support for Special Needs:Excerpt: In addition to her natural empathy, Schuyler holds on to some fantastical ideas about her world, a place in which monsters and and magic and mysticism still play a central part in her thinking. She understands the difference between that world and the real one in which she lives, but she still copes with the hard stuff with a touch of disconnect. This week, she'll face one of the hardest things the world has waiting for her. She'll face grief, the kind that represents the natural order of things, but also a level of pain and finality that will undoubtedly challenge her. (Sou...
Source: Schuyler's Monster: The Blog - February 28, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Her Own Beautiful Game
Today at Support for Special Needs:Excerpt: I confess, I've worried so much about Schuyler finding her tribe, but in some ways, she's had them around her all along. I think I always envisioned a close group that hung out after school and communicated regularly and folded each other into their daily lives. I realize now that I've been looking at it through neurotypical eyes. Schuyler's tribe was never going to behave like I did with my youthful friends. Their particular obstacles are incredibly complex, and the logistics of something as simple as a trip to the mall to hang out are complicated. In the world of Schuyler'...
Source: Schuyler's Monster: The Blog - February 21, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Valentine
Today at Support for Special Needs:Excerpt: I know there's a boy or a girl out there (probably a boy, judging from her interests so far, but never say never) who will meet Schuyler and will look past her little monster and her childlike nature, who will see what the people who know her already see. He'll recognize the hard work she'll require, but he will also understand how very, very worth it that work will be. He'll know that he's found a girl who is literally like no other in the world, a person who is unique in ways that transcend the simple individuality of every human. He'll see what a perfect friend she can be...
Source: Schuyler's Monster: The Blog - February 14, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Anything You Want to Be
Today at Support for Special Needs:Excerpt: As I've written before, I'm a big proponent of overbelieving. I've never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that "you can do whatever you want in life, be anything you want to be, as long as you're willing to work for it" is a gentle lie told to very young children. It's one that we as parents understand will be shaped and molded as our kids get older. When you're five, it's entirely feasible that you could be a cowgirl or an astr...
Source: Schuyler's Monster: The Blog - February 7, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
Viva Schuyler
Today at Support for Special Needs:Excerpt: This weekend was a big risk. One week after her sixteenth birthday party and the bumps in the road she suffered there, we took Schuyler to Las Vegas to attend a surprise fiftieth birthday party for one of my best friends (and Schuyler's godfather). Last weekend, she was undone by a gathering of her school friends that she basically sees every day, over pizza and games. We followed that up with a trip to Las Vegas, a place that is the very physical manifestation of the concept of overstimulation. It's safe to say that we were concerned. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 1, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
The Price of Happiness
Today at Support for Special Needs:Excerpt: I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 24, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
The Three Anxieties and the Lucky Brain
Today at Support for Special Needs:Excerpt: Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her br...
Source: Schuyler's Monster: The Blog - January 17, 2016 Category: Disability Authors: Rob Rummel-Hudson Source Type: blogs
