June 29, 2015

Assembling Schuyler's Armor

Today at Support for Special Needs:
Excerpt: 
When things go wrong, when Schuyler meets up with someone who doesn't understand or care, when she hears the words meant to demean her or is simply treated with disregard, I think I've taken that as a larger affront than it probably is. They're not just hurting her feelings or standing in her way. I think on some level, they're tearing down her world. And that's something I simply can't let go unchallenged.

June 22, 2015

Untold Stories of the Secret Heart

Today at Support for Special Needs:
Excerpt: 
There's so much that Schuyler is going to learn about her emotions, and the emotions of others. There's so much I want to tell her, the lessons I've learned the very hard way in my own life. I want to explain to her that her heart is fragile, but it's also tough, and that may not seem to make sense but one day she'll get it, when she thinks it's too broken to survive until she wakes the next morning and the morning after that and realizes that it perseveres. Somehow I want to tell her that she'll have people in her life who don't like her, and that's just part of life, but the hits that'll leave a mark won't come from them. They'll come from the people she loves, and who maybe even love her, but who won't be careful with her heart.

June 15, 2015

The Freedom of Summer

This morning at Support for Special Needs:
Excerpt: 
Summer is Schuyler's time to be herself. She doesn't know what that means, not exactly, and there is always the possibility of change, something that scares the adults in her life a lot more than it scares her. But given her own space and her own pace, she's got a pretty fair chance of beginning to put all the pieces together, and preparing for the chaotic and unpredictable life that awaits her.

Filing STAAR test results in the appropriate place.

June 9, 2015

Schuyler will now take your questions.

As I have mentioned before, I will be presenting the keynote address on August 3 at the Region 10 Service Center in Richardson, Texas. Here's the information:
Title: Ten Years of the Big Box of Words

Presenter: Robert Rummel-Hudson, Author
Schuyler Rummel-Hudson, Student/AAC user 
Abstract:
Ten years since his daughter’s first encounter with Augmentative and Alternative Communication, Robert Rummel-Hudson (author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, St. Martin’s Press 2008) reflects on his family’s experience and his observations on the present and future of assistive technology and disability advocacy. He will be joined by Schuyler, who will share her own perspective on her life with her Big Box of Words.

The most interesting thing about that abstract is the fact that Schuyler will be joining me, as a co-presenter. As we start putting our presentation together, she's trying to organize her thoughts. After talking about it, we'd decided that rather than just sitting down and trying to write something off the top of her head, Schuyler would rather answer specific questions and integrate that into her presentation. And she would like to get those questions from the many people out in the world who have followed her story for so long.

So if you have a question that you think would help Schuyler present her story, you can ask it in the comments here, on my Facebook page or via email at rob.rumhud@gmail.com. We talked about what kinds of questions she'd be asked, and came up with some categories that she's comfortable with.

1) Her use of assistive technology over the past ten years.

2) Her experiences in school.

3) Her experience with polymicrogyria, her "little monster".

4) Her future, both school and her adult life.

5) (And this is a big one, I think.) The parts of her life and her world that have nothing to do with her polymicrogyria. The Monster-Free Zone.

We both thank you in advance. After our presentation on August 3rd, I'll reformat her answers and post them here for everyone.


Might Have Been

Today at Support for Special Needs:
Excerpt: 
Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest. I don't know if that's a plan for success or if it's going to bite her face off one day. I only know that it works for her, and it gets her through days both simple and complicated. 
And I know that in that regard, I envy my daughter very, very much. As I should. As should we all.

June 1, 2015

Transformation

This week, at Support for Special Needs:
Excerpt: 
Because she knows. Schuyler knows she's different. She senses it every time she verbalizes in public and gets that quizzical look from strangers. She absolutely knows it when she orders at a restaurant, her iPad reading her order aloud through a Bluetooth speaker with a crisp English accent, an accent specifically chosen because why not? Schuyler watches the kids around her grasp concepts that she has to work hard to handle, and she knows that this happens, the difference happens, because her brain isn't like everyone else's. In a world of special snowflakes, Schuyler is another thing altogether, and of this she is entirely conscious.

May 25, 2015

The Faith of Monkeys

Today at Support for Special Needs:
Excerpt: 
When you see monkeys travel through the jungle, the thing that is most striking is their speed. They move fast, and when they release their grip on one vine, they are already reaching for another. They operate on faith. Faith that the jungle is healthy and the growth is consistent. Faith that there will be another vine waiting, and they won't reach out and find only air and a long drop to the jungle floor. It's not hard to imagine why parents of special needs kids might envy our monkey cousins and their confidence, and their faith that they won't fall.

May 18, 2015

A writer in the family

Today at Support for Special Needs:
Excerpt: 
These days, Schuyler is interested in writing, which of course makes me happy in the most egotistical and selfish way. She writes, and not just for class but rather because she likes it. She wants to take her imagination and put it into motion. She doesn't usually write about herself or her own life, not just yet. Schuyler creates stories, almost always of the fairy tale variety, and she peoples them with heroes and villains and princes and queens, and monsters. Always monsters, usually antagonists but not always evil. Even now, she understands that sometimes the monsters of the world simply have their own agendas, and they need to be taken seriously.