A Human Advocacy
I just had a piece run this week, over at the Huffington Post:When I examine all the interactions in my own life, it's with my daughter that I find myself developing the closest, most authentic, most real relationship. And it's one built not so much on words, which can be difficult for her, but largely on shared experience. It's important to me that much of that experience takes place in her world, sometimes internal and sometimes very much not, and on her terms. Knowing Schuyler means loving her without expectations of adherence to a societal narrative.Authentic human relationships. Friendships without pity and lacking po...
Source: Schuyler's Monster: The Blog - October 3, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Complacency
Today at Support for Special Needs:I can remember back when it felt like we'd never be able to forget, even for a moment, what hung over her head. But time passes, Schuyler grows and becomes more adept at moving through this world, and so her reality is less front and center. Her brain is so creative and effective in its rewiring and rerouting that it's easy to forget how profoundly malformed it is, anywhere from sixty to seventy-five percent of it affected by her polymicrogyria. It's easy to fall into a place where we simply assume that this brain, broken and clouded but working with startling effectiveness, will always f...
Source: Schuyler's Monster: The Blog - September 30, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Balances
Today at Support for Special Needs:For families like ours, the paths we walk aren't ones that are all that well-travelled. We don't always have that many examples of How Things Are for families of children with disabilities that are both subtle and conspicuous, and so we find ourselves searching for those paths, threading carefully, balanced between extreme possibilities. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - September 23, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Things We Do Not Say
Today at Support for Special Needs:For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn't real. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - September 16, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Stealth Monsters
Today at Support for Special Needs:Parents of special needs kids with less visible disabilities spend a lot of time trying to moderate the effects of curiosity and casual observation. We worry that our kids will be judged unfairly by the outward manifestations of their disabilities. When our kids manage to pass unnoticed through the world, we find ourselves admitting, with varying degrees of shame, that we are proud of them for avoiding the judgment and scorn of a cold society. But it's safe to say that we do the same things ourselves. It's different for us, of course. When we identify a kid having a meltdown in public as ...
Source: Schuyler's Monster: The Blog - September 9, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Everyone communicates
Today at Support for Special Needs:It's when we are faced with the subtle, nonverbal communication tools of the disabled that we find ourselves challenged to learn the language of the land, and learn it quickly and without translation to ease the process. How much easier it is to simply declare communication as unattainable, and to place the blame for that failure at the feet of the disabled.2007: Schuyler's howl of joy upon seeing the Empire State Building for the first time. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - September 2, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Outrage Machine
Today, at Support for Special Needs:If there's anything that social media seems to do the most easily, it is to serve as a great machine, churning and huffing, with gears grinding day and night. And the product the machine produces and replicates and reproduces relentlessly is outrage. Facebook and Twitter serve as its two greatest cogs, but the Outrage Machine is complex. And god, is it efficient. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - August 26, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Letter
Today at Support for Special Needs:If you're a special needs parent, you've probably seen the letter by now. It's been making the rounds for a few days. It was written and delivered anonymously to a family in Newcastle, Ontario, in response to their autistic child's presence in their neighborhood. I'll link to it, sure, but I won't quote it at length. I'll give you a few words from the letter, and you can probably get the drift."Nuisance." "Problem." "Noise polluting." "Idiot." "Retarded." "Move away.""Euthanize." (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - August 21, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Hope and Fear, and Summer's Passing
Today at Support for Special Needs:It's funny, the future. Sometimes it ambushes us, with a surprise diagnosis much worse than expected, or a seizure in a public place, or wicked words from a stranger. But sometimes, it unfolds exactly as it should. Exactly how you need it to. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - August 13, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
The Peril of What If
Today at Support for Special Needs:Sometimes the What If Game cuts both ways. What if our children really could be cured, or helped to the point that their disability is all but defeated? What does that do to their sense of identity? What if it changes the essence of who they really are, in a fundamental way? What would our relationship as parents represent then? What is my responsibility? Is it to protect that basic sense of self, or to fight to open doors that may lead them to places we never dreamed of? Are those places necessarily GOOD places? (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - August 5, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
A Day of Note
There were two notable things about yesterday. It marked the ten year anniversary of Schuyler's diagnosis for bilateral perisylvian polymicrogyria. It was the day we received all the gloom and despair prognostications for her future. And yesterday was the last day of her cheer camp, in which she performed with her middle school's eighth grade cheerleading squad, along with hundreds of other girls from other schools. Almost all of them neurotypical, and almost all of them indistinguishable from Schuyler in their demeanor, behavior and performances. These two notable things have nothing to do with each other.These two notabl...
Source: Schuyler's Monster: The Blog - August 1, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Feeling Good, and Doing Good
This week, at Support for Special Needs:If you find those stories to be inspirational in a way that feels meaningful to you, I hope that’s the beginning of something, not the end. If you watch that story and see how much a disabled person’s life can be changed by moments of kindness and a short ride in a world that otherwise elutes them, I hope you’ll ask yourself what you might do, either in your place of business or the school your child attends or as a voter in your community, to change that rough world. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - July 29, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Leave the Ladders in Place
This week at Support for Special Needs:For those of us charged with caring for and helping to build independent lives with loved ones with disabilities, trust can become hard to extend. We’ve all been burned. When we see someone like Greg Abbott build a career with the benefit of a lot of good people’s hard work, only to pull the ladder up behind him, we’re not shocked. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - July 22, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
Of Tribes and Truths
Today at Support for Special Needs:I watch the disability community again and again choose to address its issues by forming up into circular firing squads and shooting each other in the face with breathtaking zeal. I imagine the policy makers and the school administrators and the everyday citizens with no exposure to our lives and our worlds. I imagine them watching our infighting and our persistent dedication to choosing the low road, and instead of pondering the issues that are of importance to this community, they might simply conclude "Wow, what a bunch of assholes." (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - July 15, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
A Monster's Birthday
Today, over at Support for Special Needs:It's been a decade since all our unanswered questions and vague fears about our daughter's developmental issues and lack of speech development coalesced into an awkward string of words -- congenital bilateral perisylvian syndrome, later renamed bilateral perisylvian polymicrogyria -- and a list of possible outcomes, all of them daunting. Ten years since our lives became altered by uncertainty and a monster sitting forever in the room, unknowable but omnipresent.July 2003, shortly after Schuyler's diagnosis (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - July 8, 2013 Category: Diabetes Authors: Rob Rummel-Hudson Source Type: blogs
