The Trophy

Today, at Support for Special Needs:

Like their missing friend, every player on that field earns that trophy. For the members of these teams, there's no such thing as "just showing up".

On Inspiration

My latest post at the 504:

I think that any growth on my part must be because of Schuyler, because of her own giant trusting heart and her fierce, unconditional love for me, a love that I am desperate not to win, because I have it already and always have, but rather to deserve. Schuyler gets up every day and she moves into the universe like a storm front, and her success or her failure on any given day is almost beside the point. She perseveres because it's what she has to do to be in the world. And so I try to put myself together as a kinder and more humane person. A better person. The father she deserves.

Schuyler and me, at the time of her diagnosis

The Future Speaks

Today at Support for Special Needs:

This technology means a lot of things to a lot of people, but the universal power it holds is simple. It means independence. It means autonomy, of expression and self-determination.

Guest Author to Discuss Saga of Raising a Child Without Words

Guest Author to Discuss Saga of Raising a Child Without Words

Robert Rummel-Hudson, author of Schuyler’s Monster, will speak April 9 at The College of Wooster

April 4, 2013

Contact
John Finn - 330-263-2145 - Email

WOOSTER, Ohio — Robert Rummel-Hudson, author of Schuyler’s Monster: A Father's Journey with his Wordless Daughter, will share his story at The College of Wooster of Tuesday, April 9. His talk, which is free and open to the public, begins at 7:30 p.m. in Gault Recital Hall of Scheide Music Center (525 E. University St.). A book signing and a dessert reception will follow the event.

Schuyler’s Monster is the story of the relationship between a precious little girl and her family, particularly her father, struggling to find the answers to a child’s silent world. The book chronicles how their relationships formed without traditional language against the expectations of a doubting world.

Schuyler was diagnosed at 18 months of age with Bilateral Perisylvian Polymicrogyria (BPP), an extremely rare neurological disorder caused by a malformation of the brain that can affect the patient’s speech and fine motor control; cause partial paralysis of the facial muscles, tongue, jaws, and throat, as well as difficulties in speaking, chewing and swallowing; and result in sudden episodes of uncontrolled electrical activity in the brain, leading to possible grand mal seizures. Schuyler communicates through an Alternative Augmentative Communication Device (AAC), which is manufactured in Wooster by Prentke Romich.

Schuyler’s disability had a profound impact on her father, who went from a sarcastic, befuddled dad to a special-needs parent. Thrust into a battle against this rare and invisible disorder, Rummel-Hudson chronicles his own depression, his past family dysfunction, and the nagging suspicion that he was not the right person for the job. In the process, he discovers a sense of purpose and responsibility, and becomes the father and advocate that Schuyler needed to help fight her monster.

Rummel-Hudson’s lecture is sponsored by Wooster’s Department of Communication, the campus chapter of the National Student Speech Language Hearing Association (NSSLHA), the Cultural Events Committee, and Cross Cultural Connections.
Additional information is available by phone (330-263-2647) or e-mail.

Brick Wall Awareness Month

Today at Support for Special Needs:

Despite accommodations, our kids don't generally do well at all on these tests, and they find themselves deeply demoralized by the results. It's an area in which they cannot help but feel a direct comparison between their own abilities and those of their neurotypical classmates. In subjecting our kids to these tests, we add to the already daunting obstacles they climb every day, obstacles we can barely even comprehend. We don't generally learn much of anything about students with disabilities who take these tests. We learn plenty about the system, but nothing helpful. Nothing we didn't already know. 

Three Cheers for Inclusiveness

Today, over at the 504:

It's easy to make fun of the A for effort, the trophy for participation, but the fact is, for Schuyler and countless kids just like her, those trophies are the ones that sit on their shelves. And they're not cheap tokens of faint praise, either. It's impossible to overestimate the hard work and perseverance those trophies represent to kids for whom participation alone is a triumph. That very real accomplishment is made possible by programs like the Special Olympics, or the Miracle League in which Schuyler plays soccer and baseball with other disabled kids, or the inclusive cheerleading squad at her middle school. Schuyler and her friends try so hard to fit into the world. In programs like these, they succeed.

What We Need

Today, on Support for Special Needs:

There's a great deal that we all could use from those around us who love our kids and want to be a positive presence in their lives. We don't always know how to ask for help, nor do we often admit openly when we're in over our heads. That high water mark is different for us all. Some lucky parents might never get there. Others perpetually exist in a place of quiet desperation, and the people around them never suspect a thing, not until they really pay close attention. Sometimes you have to really be watching for it. Most of us won't ask for help very often. Very few of us will ask a second time.

Finding Her Own Voice

Today at the 504:

It's one of the dirty secrets of assistive voice technology. There are a million good reasons to use it, and the innovations advance remarkably every day. But as one noted assistive tech innovator pointed out to me as we sat in an exhibition hall full of the latest technology, "Every piece of assistive tech equipment in this room says the same thing to the casual observer. It says 'I have a disability.'"

A Father's Fear

Today at Support for Special Needs:

As a parent, those statistics are sobering. As a father, or at least as this father, these odds fly in the face of every protective impulse I feel, and I feel a lot of them, all the time. When Schuyler was a little girl, protecting her felt, well, not easy exactly, but it felt possible, at least. Now that she's thirteen, it seems as if the dangers to my daughter lurk in every darkened space, every hallway at her school, but most of all, those dangers hide in her own trusting and gregarious and naive nature. Schuyler understands a great deal, but she trusts very easily and is eager to meet new people, eager to a fault.

The Quiet Times

This morning, over at Support for Special Needs:

His advice to us has been more therapeutic than medical. "Let her be herself," he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it's just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it's good advice, even if it can be very difficult to take.

On the Word

As a part of today's observation of "Spread the Word to End the Word", sponsored by the Special Olympics and Best Buddies, I've written a new post over at the 504. Just revisiting some thoughts on "The R Word", from a recent speech:

In recent years, I've found myself getting caught up in exactly how unprepared the world really is for our kids, and how ugly the result can be. It's easy to forget. It's easy to become so insulated in our everyday lives as parents and so infatuated with our own beautiful children that we forget that to much of the outside world, these kids are simply perceived as being... less.

Traveling Companion

Today, at Support for Special Needs:

I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.

The Invisibility of Exceptional Children

Today, at the 504:

"Then there's the real kind of invisibility, the kind familiar to the poor or the disadvantaged. And most of all, the invisibility of disability, which manifests itself in a million different ways: the school board meeting where money is allocated to high profile programs like athletics while special education fights for inadequate resources; public discourse on special needs issues in which persons with disabilities are excluded from the discussion; conversations about persons with disabilities, in which they are spoken about as if they're an abstraction, there but somehow not there."

Autonomy is a Kind of Monster, Too

Today, at Support for Special Needs:

"Schuyler's differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she'll be okay with that for a while."

Alone on a Crowded Sea

‎Today, at Support for Special Needs:

"I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don't think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it's more like there are a great many little boats bobbing around in the same dark sea. And perhaps that's the best we can hope for. Tend your little boat, and find the friends with who you can tie onto for a time and help each other."

A Break from Passing

Today at Support for Special Needs:

"So Schuyler learns to pass, and I try to show her that she doesn't need to while at the same time helping her to construct this Potemkin village of outward normalcy as best as I can. It's complicated; I feel guilt when I assist her in building the mask, but I also sometimes wonder if by encouraging her to embrace her difference I'm not setting her on a path that, better or not, may very well contain more pain, more disappointment. Schuyler's own wishes are much clearer; she wants to be like everyone else. She all too frequently expresses the heartbreaking sentiment that she wants to talk like everyone else. When we do her homework or study for her tests, especially for the mainstream classes she attends, I can feel her frustration at not quite getting the things that she must be aware come so easily to her neurotypical classmates."

Sometimes We Celebrate

This morning, over at Support for Special Needs:

"Sometimes we don’t ask too many questions. Sometimes we don’t pick apart the decisions made by the people in her life, or try to look too deeply into those processes. Sometimes we don’t need to hear how a judge might make a choice based on something besides technical perfection or demonstration of proficiency, but instead on something larger, more powerful, and less subjective. We don’t need to know what moved someone to do a kind thing for Schuyler, or to try to measure the exact thing that a positive mark might be recognizing. People make fun of the “A for effort” without realizing that sometimes, the effort is the thing. It’s not the often-mocked “everyone’s a winner” approach. It’s more an acknowledgement that for some, the effort really is Herculean, and the fruits of that effort deserve accolades."

Congratulations to Schuyler, my very own Division I award-winning Valkyrie ninja marimba warrior.

The Difference

Over at The 504:

"Like most special needs parents, when I spend time with the parents of neurotypical children, I become hyperaware of the differences."

A Life's Work

Over at Support for Special Needs, I discuss what has become of me in a post that I could have called "What I Want to Be When I Grow Up", if not for the fact that I am in fact quite old.

Two things. Three, if you count the chinchilla.

Two quick orders of business today.

First of all, I want to very publicly thank Dr. Janice Light from Penn State's Department of Communication Sciences and Disorders. I had the opportunity to speak to her class this morning about Schuyler and AAC and the experience of being a parent wielding a rubber sword. One of the very best things to come out of writing my book has been the opportunity to meet and speak with the young people who are heading out into the world to make a difference, to make THE difference, in the lives of people like Schuyler. They are my heroes, and it really is an honor and a privilege to share my own small insights with them.

Secondly, I'm happy to announce that I will be contributing to the new special needs blog, The 504, over at Parenting.com. You can read my introductory post, Meet Schuyler, Monster-Slayer. (It's sort of a "Hi, this is what I'm all about" post, so it's not exactly going to be new stuff for regular readers.) I'm happy that they've started this new project, and even happier that they've invited me to be a part of it.

Okay, that's it. Oh, and here's our new chinchilla, because as you may or may not know, chinchillas are exceptionally cool. (My Instagram and Facebook feeds are mostly about chinchillas these days, in no small part because it makes me happy, imagining everyone saying "What's with all the goddamn chinchilla stuff?" I gotta be me.)

Hello, Frida.