My All, at Fourteen
This week always presents a natural time to stop and reflect on where Schuyler is in her life, with her birthday only a few days away. It's also the end of the year, so everyone's in this whole "looking back" mood anyway. It's a good time for marking transitions.This year, it feels even more so. When I look back on Schuyler's first teenaged year, it feels like a great deal of significance took place, not all of it easily measured or commemorated. She doesn't come across as a different person than she was a year ago, but she just seems... more. More complete. More complicated. More damaged. Stronger. A little sadder. A lot ...
Source: Schuyler's Monster: The Blog - December 18, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Buccaneer Life
Today at Support for Special Needs:The thought of striking out against that, of hoisting a flag of defiance and breaking down some of that restricting world’s walls? That’s some powerful fantasy material for those of us trying to navigate the sweet spot between this rock and that hard place. You don’t have to ask us twice if we would like a turn at the cannonade. Our flintlocks are already loaded. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - December 16, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Hardest Forgiveness
Today at Support for Special Needs:As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - December 9, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Injustice League
This week (sorry, I forgot to publish this on Monday) at Support for Special Needs:What I truly want is for my friends to run out of hurts, to have no stories of our community being treated poorly. I want someone to say "I looked up #retard on Twitter, and nothing came up." I want to hear about the organ transplants being granted to patients with intellectual disabilities. I want to hear about how the kids on the bus were kind and the popular middle school girls gave the shy little nonverbal girl at the back of the room a makeover after school and taught her to dance to One Direction. I want to read about kids who are diff...
Source: Schuyler's Monster: The Blog - December 5, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Uncertain Season
Schuyler decorated our tree this year. I can remember a time, roughly a week ago, when she was a small child who would have only reached the bottom branches. Two weeks ago, I believe she was a baby and would have been putting the ornaments in her mouth. Schuyler turns fourteen in a few weeks. Just typing that out felt weird, as if I'm lying to you. Well, of course I am. Little girls aren't fourteen. Babies aren't taller than their mothers.It's been a strange week for Schuyler. She had an MRI a few days ago, but apparently she wiggled too much, despite her best efforts to hold still, so she has another one next week, under ...
Source: Schuyler's Monster: The Blog - November 29, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Brain Pill
Today at Support for Special NeedsI don't know what I was expecting, but Schuyler's brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see "werewolfism" listed. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 25, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Storm Warning
We've embarked down another path with Schuyler. It's not a path we were hoping to ever step foot upon, but then, we were perhaps entertaining unreasonably high hopes.We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache ...
Source: Schuyler's Monster: The Blog - November 22, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Her World, Her Words
Today at Support for Special Needs:But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it's here where the results of her increased freedom of expression and communication suddenly become clear. It's not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn't mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 18, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
A Little Space
This morning, over at Support for Special Needs:If Schuyler feels comfortable with even a few people in a gathering, she's a social butterfly, and an explosion of personality. But it's different when she's on her own, with no supports and no comfortable narrative to follow. For Schuyler, with communication being as fragile as it is for her, her social anxieties can feed on her in ways I probably can't imagine. She's not on the autism spectrum, nor am I to my knowledge, but in those settings, surrounded by people she doesn't really know but who come at her with a startling familiarity, a kind of sensory overload shuts her d...
Source: Schuyler's Monster: The Blog - November 11, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
What Inclusion Isn't
Today at Support for Special Needs:Denying our kids the ability to work hard and perhaps even fail from time to time, instead just displaying them in front of an approving crowd and announcing "Look at this inclusive philosophy we've embraced!", that isn't inclusion. That's simply building a Potemkin village for the world to see and admire. It's a facade. It doesn't fool Schuyler, or any other kid whose potential is wasted because of fear of failure and a desire to do the nice thing, which is so easily confused with the right thing. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 4, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
At the Center of her Own Narrative
Today at Support for Special Needs:Putting Schuyler at the center of her own story isn't just polite. It's appropriate, and it's essential. She's thirteen now, and while I've certainly spoken on her behalf, or at least facilitated her communication, when she was younger, she's reaching an age where she will continue to advocate for herself more and more. I still speak for her far more often than I should, but sometimes I catch myself. Even as we endeavor to increase Schuyler's communication skills, we're working to provide her with the tools to express herself more comprehensively and training her to use those tools more e...
Source: Schuyler's Monster: The Blog - October 28, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Monster Love
Today at Support for Special Needs:I'm sure there are a great many reasons that Schuyler loves monsters so steadfastly. Monsters are outcasts, but they aren't powerless, even when they lose. Monsters are different, in ways that are usually instantly clear. Monsters make great friends, especially if the world feels overwhelming, or unfriendly, or even dangerous. Monsters sometimes want more than to eat your city. Sometimes they want love, or at least a place in the world all their own. All of the above, and probably more. I don't think Schuyler could even tell you why she loves them so much. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - October 21, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
With Shea
Lately, we've been watching the story of Shea Shawhan very closely.There are a few reasons I've been so interested. One is that the story is just so awful. Shea is a high school junior who suffered a brain injury at birth and has been developmentally disabled ever since. She also experiences pretty serious seizures. The news stories I've read have all stated that she has the intellectual capacity of an eight year-old, and while I usually shy away from those kinds of statements (I don't know that most kids with developmental disabilities develop at equal rates in all areas of their minds; that's certainly not true of Schuyl...
Source: Schuyler's Monster: The Blog - October 19, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Pause
Today, at Support for Special Needs:So sometimes you just have to stop. Your all-encompassing love sustains you through the hardest times and it's recharged by successes and moments of clarity, but love isn't enough, not always. It's the most rewarding life you can undertake, and you will grow in ways you can't have imagined at the beginning, but sometimes the experience of advocating for and taking care of a special needs child feels like stepping out into a maelstrom. Every so often you have to hit pause, or you will surely be swept away. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - October 14, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Invisible Man
This morning, there's a new post at Support for Special Needs:If you are writing about an issue that affects you as a disability parent, and if that issue doesn't relate to something that is specific to the experience of being a mother, I'm not going to ask you not to address your concerns to "special needs moms" only. But I am going to ask you why you're making that choice.Is it because in your experience, mothers are the ones doing the heavy lifting? That makes sense; the statistics certainly back you up to some extent. But if that is in fact your perspective, I have to ask you, do you like it that way? And if you don't,...
Source: Schuyler's Monster: The Blog - October 7, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
