Unseen Giants

I wrote a Father's Day piece for my friends over at BridgingApps. They're great people and I'm honored that they're featuring my words.

Happy Father's Day to all my fellow dads of the world. I hope you get a nice tie.

Excerpt: 

If you asked me that oft-repeated but generally useless question, whether or not I'd take my daughter's disability away from her if i could, I won't lie to you. My answer now, as always, would be yes, without hesitation.

Should we want to take away our child's disabling condition? It's a hotly contested question, but it misses the point. The thing we come to learn as special needs fathers is that it doesn't actually matter how we answer. No one is ever going to ask that question as the prelude to a miracle.

We can't fix, but we can see. We can look and really see our kids, and come to understand that their disabilities are a part of their construction, threads that run deep and true in their tapestry. We become caregivers, and we become champions. We learn to fight and we learn to nurture, in ways that the fathers of typical kids might never have to do. We don't allow ourselves to become Homer Simpson because our worlds won't work with that character.

GUEST POST: The Queen of Monsters

Note: Schuyler and I were talking the other day about how she's going to use her new iPad Mini to express herself. She said she wants to write ("Like you, Daddy-O!"), and I asked her if she wanted to put together a little something for my blog. She said yes.

I helped her spell two words and I helped her clarify one concept that she was having trouble expressing, but otherwise it's exactly as she wrote it. (Before she changed it, she referred to her voice and her brain together as her "word box", which I thought was fascinating.) She even picked (and helped create) the picture.

Now, I'm not sure how to say this next part without sounding like kind of a dick. I'm not posting this for Schuyler because it's sweet, or cute, or precious, or least of all inspirational. If that's what you get from it, then you're missing the point. She's finding her expressive voice. There are some very revealing passages that you're going to miss if you simply think it's cute.

And that would be an incredible shame.

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My name is Schuyler Rummel-Hudson and I am a 7th grader in Robinson middle school and I play the drums and the marimba. I like to draw and paint pictures with my friends. I feel happy about talk to my friends with my I-pad mini.

I feel about help others and teachers in my school and everywhere in the world!

I feel different about talk like this and I was born with my voice and my brain.

I feel sad I can't talk like my friends and I feel mad I don't have a voice.

I feel happy using my I-pad mini for the talk with my friends and my teachers and my family.

I going to get great use in the future I grow older. I want to be artist with my mom and I wants to help people are hurt. I wants to write a book about sea monsters and huge and mean monsters with my dad.

I wants people to know me is I love monsters and Greek stories. When I was little girl I feel tiny and alone and now I feel HUGE! I am going to BIG things with my family and my life in the world.

Your author,

Schuyler Rummel- Hudson :)

Schuyler answers

Okay, so she didn't answer every question that was sent to her; she sort of ran out of gas, attention span-wise. But I think she got the bulk of them.

For those of you interested in how this worked exactly, I asked Schuyler the questions and she answered them directly. I only assisted her with grammar when she asked for help, and then I would point out what she got wrong and let her figure out how to fix it.  (When there are caps or exclamation points, those were very specifically dictated by Schuyler. She can be particular.) She mostly used her speech device (which she calls Pinkessa), but also answered verbally when she could and used sign language very occasionally. This is how communication with Schuyler works; using just one method would be very strange for her.

When couldn't entirely put something into words accurately, she was able to mime it out for me so I understood. Once again, she illustrates both the frustration and the weird beauty of how she communicates. It takes some work to learn Schuylerese, but it can be pure poetry when you get it.

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How did you finally manage with your locker at your new school?

It's hard, but I can do it now. I like my new school and my new teachers and my new friends. We are the purple hogs!!!


Rate your dad's current facial hair on a scale of "awesome" to "embarrassing".

I liked it a lot. Daddy looked like Santa Claus.


Schuyler what would be your idea of a perfect day?

I like to go swimming with my dad and mom.


What do you like most about your dad? What is your favorite movie?

I liked the mustache. Daddy is so funny. King Kong, Coraline, The Iron Giant.


What are you most looking forward to about school this year?

I like to play the big drums. I want to make new friends.


If Godzilla and King Kong had a fight who do you think would win?

Godzilla. He has things on his back and shoots fire.


If you were going to make a movie, what would it be about?

I would make a movie about mermaids who have powers.


What is your favorite song and why?

Lady Gaga, Telephone. I like it A LOT!!!


Do you think of yourself as different? And what makes you different?

Pinkessa is different and I am too. I can't talk.


What is the one thing you want everyone to know about kids who may be different?

We like to play and have fun. We don't like pointing and mean people.


So what is Rob REALLLLLY like?

He is funny like a clown!!!!


What is the funniest thing your dad ever did?

He said I had a tail.


Have your parents signed you up for Girl Scouts yet?

No. I want to go. I want to camping and sell cookies.


I'm just slightly older then you and i think you are fantastic!!! What do you want to be when you get older?

I want to help sick people and also I want to be a police woman.


Hi Schuyler-what are some things that make you happy?

Daddy and Mommy and Maxie and Lulu and Petey and my mice and Squinkees and LaLa Loopsies. And that's it!


Do you like it when your parents help people understand what you're saying or try to explain what you're thinking? Or is it annoying sometimes?

Yes, I can't talk and Daddy and Mommy know what I saying.


Do you feel like a special, famous kind of person, being the subject of a book and a blog? Or do you just kind of ignore that?

I don't care!!!!!


I'd like to ask if she's offended by the word "retard" when it's used by people to make a joke or poke someone else. Also, I'd like to know if she thinks Justin Bieber is a tool.

I don't like that word AT ALL!!!! It is a bad word! I don't like him at all!! He's not my boyfriend!!


You've got a wonderful fashion sense, and I would like to know - what are a couple of things that you are excited to wear to school? Do you like tights and tennis shoes or boots? Do you prefer skirts or pants?

I like skirts and dresses earrings and I want some new boots. I want purple hair again.


Tell me about the your biggest accomplishment so far. What do you want to be when you grow up?

I flew an airplane. I want to be a pilot.


Schuyler - tell us something your daddy does that is super GROSS!!!!!

He farts! (Note: She's a hypocrite...)


Schuyler, if you could do anything in the world, what would you choose to do?

Have fun with my dad and my mom.


Ninja, pirate or dinosaur?

Dinosaurs are my favorite.


What's your favorite nickname?

Daddy calls me Schuyler Bear and I like that. I don't like Chickenhead Jones!


If Schuyler could have any super power, what would it be?

I would be a water bender. (Note: That's a reference to the Avater/Last Airbender tv series.)

Airbending Schuyler art by Crystal

If you could have any three pets, what would they be?

A cat, a turtle, and a bird.


Are you dressing up for Halloween? What is your costume going to be?

Medusa! We are making a snake hat!!!


Do you think you'll ever have your own blog? If so, what would you write about?

I will write about swimming and flying airplanes and school and band and my friends and Daddy and Mommy.


Do you like video games? Which ones? I like Nintendo and really old games.

I like Sports Resort and Mariokarts!!!!


Hi Schuyler! My son, Ethan, is 6 and has a Vantage Lite like yours. He picked black, though. We are having trouble figuring out what to call it. Do you have any ideas?

You can name it Max. Max is a name for a boy.


Do the kids at school ever pick on you? If so, why do you think they pick on you and how do you answer them?

Yes. They're mean and not friends!!!! I tell them I don't care!!!


I visited Plano last summer and I got super excited when I saw the Purple Cow, because I remembered it from this blog. I didn't get to try it though :( When I visit Plano again, what's the best thing to get at the Purple Cow?

I like to eat mint chocolate chip ice cream!!!!


Hi Schuyler! What's your favourite story?

My favorite book is Don't Kiss the Frog!!


If you could either fly or be invisible which would you be and why?

I want to be invisible and I don't want bad guys get me.


Hi Schuyler- You might remember us from the Apraxia Walk-a-thon in 2009. You walked and played with my daughter Ava. She is 5 yrs old now and she is getting the same Big Box of Words as you have. Here's my questions:

1. Was it hard for you to learn how to use it?

No, it is so easy! Mrs. Williams helped me to learn Pinkessa.

2. Do you like using it, or do you like signing better?

I like Pinkessa better.

3. When other people ask why you can't talk, what do you wish you could say?

My brain won't let me talk. I have Pinkessa to help me talk.


What is the toughest thing about not being able to talk? Do you ever wish you could just tell people what you think?

It's hard when people ask me questions. Yes.


Hi Schuyler! I am a future speech language pathologist and wanted to ask about Pinkessa :)

When do you use it most?

At my school.

How would you change it so that works best for you?

Make it give me a voice.


(Note: She had a hard time with this one, not because she didn't have an answer but because she didn't know how to put it in words. This is a case where being with her in person helps. She indicated with her hands that when she says she wants it to give her a voice, she means that literally. She wants the device to enable her to physically speak for herself with her own physical voice. I never knew that until now.)


What do your parents do that embarrass you?

Daddy calls me Chickenhead Jones!! Mommy poots!!

Schuyler's Poetry Book

Schuyler has been writing poetry in school, accompanied by her own drawings. I'm not under any illusions here; aside from perhaps the one about the fox (which is also my favorite), these poems are clearly the product of a LOT of guidance and help from her teachers.

What keeps it from being "macaroni art", in my opinion, is the fact that the concepts and imagery should be very familiar to anyone who knows Schuyler. It's all hers.

(Just this once, I'm going to keep comments closed on this post. I wanted to share something special instead of just my insecurities, as a break from my self-indulgent writing of late. Either you'll enjoy it or you won't, but I don't need to know either way. I know how I feel about Schuyler's work. And that's enough for me.)

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COUPLET

I heard of a fox
I opened a box.
I heard of a fox
He's wearing my socks.
I heard of a fox
He jump and he knock.
I heard of a fox
He has the pocks.

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HAIKU

Puppies
Puppies can look sad.
Puppies are like little dogs.
I like to hold them.

Pasta
Ravioli rocks.
Ravioli is awesome.
Cheese filled pasta squares.

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"Queen of this whole world."

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QUATRAINS

I went on the field trip.
I ate a cookie and a chip.
I wanted to give a big cheer.
When I saw a pretty deer.

I ate a cookie that was chocoate chip.
I found it on a pink spaceship.
Through the air the ship went zip.
I am going on a trip.

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CP Study

For parents of kids with cerebral palsy, I'm posting this on behalf of Adam Bowker. Adam is a speech pathologist and AAC researcher whom we had the pleasure of meeting at the American Speech Language Hearing Association Convention last year. He's one of the good guys.

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Dear parents,

I am writing to invite you to participate in an online discussion forum. This is part of a research study about the friendships of children with cerebral palsy (CP).

Results of this study will help professionals (teachers, speech-language therapists, support staff and others) to provide better supports to children with CP to promote their social involvement.

Parents who participate in the study will join in a focus group conversation on an Internet message board with other parents of children who have CP.

If you have a child with cerebral palsy between 5–11 years old, and would like to join in the discussion, or if you have any questions about the study, please contact Adam Bowker at Penn State University. | email: adam.bowker@psu.edu | phone: 814-865-5850

Guest Blogging: Marketing Tips For Authors

Squirrel monkey
Originally uploaded by floridapfe

For those of you who are writers, particularly of nonfiction, I wrote a little somethin' somethin' for Tony Eldridge's Marketing Tips For Authors.

I wrote specifically about developing a platform, which for nonfiction writers can be sort of a twitchy concept. "To even be considered for publication, you must have a great platform!", we're told, and yet it seems to be one of those terms that means whatever a particular agent or editor or publisher thinks it means.

Well, now you can add my particular take on the matter. That ought to keep everyone nice and confused. My work is done.

Guest Blog: The monster in our marriage

I've never had a guest blogger, but I was approached by Ellen of To The Max, and I thought it sounded like a fun idea. Ellen's an editor at a major magazine and is the mother of Max, a tenacious little guy with his own monsters. Her story feels awfully familiar.

Thank you so much, Ellen.

-- r

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The monster in our marriage

It's the morning of a snowstorm that just started. My husband's with our four-year-old at gym class, and calls to say hi. Because there's a possibility that we might be snowed in for a few days, I tell him to grab a carton of milk from the supermarket on the way home and any other foods that'll carry us through. Dave walks in the door with a very small bag. Inside: a gallon of milk, a jar of salsa and a package of Chili Lime Tortilla Chips. I stare at him, then burst out laughing. We break open the chips and dig in.

This is Dave: A guy who's not always practical, but who sure knows how to enjoy life. This is me: A person who's overly practical and sometimes forgets to enjoy life. We always knew these opposite traits would balance us out, but we could never have imagined just how much so until our son was born. Max had a stroke at birth (not as uncommon as you think-it happens to about one in every 4000 kids). The two primary doctors at the hospital, who we nicknamed Dr. Doom and Dr. Gloom, told us the worst. That Max might never walk or talk. That he would have mental retardation. That he might not see well or hear. You name it, they warned us about it.

That was six years ago. Today, Max walks. Max talks with some words, and via a communication device (a Dynavox), gestures, his eyes. Max is bright. He's determined. He's curious. He's got a bubbly personality, and a wicked streak for teasing his little sister. Like Schuyler, he's also pretty damn cute, which has been a real asset. He has his challenges, but he's the opposite of a nightmare. And the one-two punch of my husband and I has been good for him.

Dave has always been able to just enjoy Max as a kid, whether he's playing monster with him, plopping him onto some motorcycle parked on the street and pretending to let him drive it or splashing around in the pool with him. Me, I'm always trying to sneak therapeutic exercises into his playtime. I'm the one who notices Max is growing out of his foot braces and needs new ones. I'm the research nut -- the first thing I did when I walked in the door after the hell days in the NICU was get online and look up information on strokes and therapies.

Early on, I heard that having a kid with special needs can cause a lot of tension in a marriage, even break it up. I don't know that it's exactly benefitted ours -- I mean, come on. But I do think Max has made Dave and I realize how strong our bond is. We're able to work with each others' strengths and weaknesses, laugh through it all and keep each other sane. Well, most days.

We fight most often about what I consider Dave's “denial” and he considers my “pessimism” (pragmatic, I call it). A couple of years ago, we went to a doctor who told us, “I see Max has trouble using his right hand, it'll always be his helper hand and he'll mostly rely on his left.” After, we assessed the appointment in the car ride home. Dave said, “See? Max will be able to use both his hands!” And I said, “No! He said he won't really be able to use his right hand, and he'll need to make do using one! Hopefully, that one will work OK!” We're the glass half full/half empty couple. Or make that the salsa bowl half full/half empty. It works for us. Most important, it works for Max.