SCHUYLER'S MONSTER: Schuyler's Future

Transcript:

Rob: What do you see in Schuyler's future when you imagine, like every parent imagines their kids', even if they pretend they don't?

Julie: I would love to see her living by herself, having a boyfriend, girlfriend, whatever. You know, partner in crime. Just somebody to take care of her. I worry about that all the time. I don't want her to think that we're her caretakers, you know. Because she's independent like the both of us, and she...

You can tell that she wants to say so much, and she wants to do so much. And maybe that's a cheesy goal, but I just, I want her to be able to travel, and go to the movies with her friends, and drive and experience life and, you know, not have the old people chauffeuring her around and, you know, cleaning up after her. That's like my one goal is for her to, like, have her own life and not have to have us lagging behind her, checking up on her.

I mean, we're her parents. We're always going to be there for her, but you know, you gotta cut that cord. And that's going to be scary. That's kind of a scary thought to me, her being by herself, like, in an apartment like this, and cooking her own meals, doing her laundry, having pets, paying bills. It's a weird concept, because she has no concept of that stuff right now.

Who knows, maybe she won't. But I can dream, can't I?

SCHUYLER'S MONSTER: A Higher Purpose

Transcript:

Rob: Yeah, I don't think anyone who knew me before Schuyler was born would have ever said, "Yeah, that's the guy to raise a child, and certainly a child with special needs." I was... Things were a lot different. I was a very selfish person. I wasn't a bad person, I don't think, but the decisions that I made in my life were very self-centered, and if things got hard, I would bail, I was out. And after Schuyler was born, I learned a lot about myself.

And it wasn't just that I couldn't bail on Schuyler. I found that I didn't want to. You know, we've been through so much, and it's been so hard at certain times, but at no point was I ever, "God, I wish I could get out of this."

You know, Schuyler taught me a higher purpose, and a higher feeling. And that's made me a better person. I'm a much better, a much different person than I was before Schuyler. So I don't think I certainly was the ideal father, but I've really learned to be exactly, I think, much of the time anyway, exactly the father that she needs. In that sense, she's been my greatest teacher.

SCHUYLER'S MONSTER: Sadness and Joy

Transcript:

Rob: I think it's pretty clear that I can be a sad person. It certainly comes out in my writing. Schuyler's situation makes me sad. I think about it. Sometimes I have dreams, I dream about her, and in my dreams she talks to me, and she tells me everything's going to be okay. And then when I wake up the next day, it's the first thing that hits me, that it was a dream. So it is sad, and it does weight down on me.

It doesn't seem to be sad for her, though. She's always very positive. She gets frustrated, certainly. But I don't know that she seems to get depressed about it. I think she's accepted the situation and is ready to fight. And so the joy that I get and the strength that I get in my life is that which I draw from her. And in that sense, she's made me a better person. I'm certainly ten times the person I was before she was born.

I think... There's a temptation, I would think, to feel pity for parents who have special needs kids. And yet, I see how much Schuyler has changed my life, and how much she's improved me as a human being, and I sort of think that people shouldn't pity me, they should envy me. They should be jealous because I've got Schuyler in my life, I've got Schuyler doing the "Schuyler Effect" on me.

And if they don't they should. They should envy me. And I hope that comes out in the book, I hope I represent her accurately and in a way that people can see beyond her disability to this amazing person. It sounds like a cliche, and it's absolutely true.

SCHUYLER'S MONSTER: On Language

Transcript:

Rob: You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.

I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.

And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.

You know, in the past, people have asked me, they'll say "How do you think Schuyler will react one day when she reads that you thought she was broken?" You know, that she'll take some offense at the kind of language that we've used. I don't think she will react at all. I certainly don't think she'll be surprised. I don't think she'll feel like she's been deceived all this time.

We are very straightforward with Schuyler about her disability, and she fights it. She brings the fight every day, without any illusions, but also without any expectations that there's something that she can't do. She knows what she has to fight, and she knows that a thing that is broken is a thing that can be fixed. And a situation that requires this kind of work, she's exactly the person to do that kind of work.

So I think if Schuyler reads that one day, she's going to know that I understood, and I cared. I loved her, I loved her enough to take up this fight with her.

Twitch

I'm jumpy today, and it's just not getting any better.

The day started with Schuyler's return to school after two weeks off. This meant that all our usual morning rituals kicked back into gear, including my favorite, singing the theme to Kenny the Shark with Schuyler, but it also meant watching her get onto the school bus again and watching it drive away while trying to suppress the agita and the mental images of various bus-related disasters running through my mind.

A quick look in the mirror before heading off to work revealed that I had something in my hair, something light-colored, maybe shaving cream. Only it wasn't. I tugged at it and ran my fingers through it, only to discover that what I was seeing was in fact grey hair. That's AWESOME.

I got to work just in time to be interviewed over the phone for the upcoming Wondertime piece (and I do not envy the poor intern whose job it will be to transcribe my um-filled babble). Not half an hour later, I received the nice review from Publishers Weekly (it did contain the word "stupid", but they were quoting me, so I have no one to blame but myself), and I was feeling much better about my day.

And that's when the university began testing the tornado warning system.

There really is only so much "BLAT!!! BLAT!!! Severe weather! Take cover! You're all going to die!!! BLAT!!! BLAT!!!" that I can handle today. It's going to give me grey hair.

Oh, wait a minute. Shit.

Bring forth the fancy pants

A new review of the book, from Publishers Weekly...

-----

Schuyler's Monster: A Father's Journey with His Wordless Daughter
Rummel-Hudson, Robert (Author)

ISBN: 0312372426
St. Martin's Press
Published 2008-02
Hardcover, $22.95 (288p)
Family & Relationships | Children with Special Needs; Biography & Autobiography | Parental Memoirs

Reviewed 2008-01-07
PW


The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden "monster" is causing her wordlessness, they endure "two years of questions and tests and at least one unsatisfactory diagnosis." But while Rummel-Hudson initially rages at God for giving Schuyler "a life that would never ever be what we'd imagined it to be," his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a "stupid blind father's love." As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the "gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed," leads him to understand that "she was the one teaching me how to make my way in this new world." (Feb.)

Copyright © 1997-2005 Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

SCHUYLER'S MONSTER: Fathers' Stories

Transcript:

Rob: I do think that there is a place for fathers' stories. I think that now more than ever, people want to hear the stories that fathers have to tell.

I think the past fifty years or so have been kind of a weird time for fathers. After World War II, I think fathers in our society were defined by their absence as much as by the things that they did. You had the fathers who were lost in the war. You had fathers who were absent because of their careers, because of their work. You had the "deadbeat dads."

So I think in the past maybe twenty years or so, you've seen this move back towards fathers who want to be involved and are insisting on being involved in their kids' lives. And it's a fascinating time, but it also, it's totally up for grabs. The stories that fathers have to tell are very individual. Especially with a kid like Schuyler, there's certainly no user's manual for Schuyler, and there's no job description for being a father, certainly not a father for someone like Schuyler.

So it's... I'm really excited about the number of fathers' stories that are being told, because they're all different, they're all individual, and I think that's great, and I hope there's more.

SCHUYLER'S MONSTER: "The best that we can..."

Transcript:

Julie: I think it's really shown me what I'm capable of, what my strengths are. Learning not to back down to teachers, to school administrators, to our families when they doubted us, that we just kind of did our own thing and persevered.

It's a pretty eye-opening experience, getting handed this huge responsibility for this little person, and being told "You have no guide book, you have no rules. This is what's wrong with your kid, and you have no idea why, and just, here you go, here's the book. Enjoy. Try to do the best that you can."

And I feel like we have done the best that we can. Some days are good, some days are bad. But at the end of the day, I think you and I can feel confident in knowing that we've raised a pretty amazing kid.

SCHUYLER'S MONSTER: Advocacy

Transcript:

Rob: You as parents and family of broken children and disabled family members, you are the absolute best advocates for your loved ones. And that's hard. It's hard because it's... we want to defer to experts. Julie and I were both music majors. We had no experience with children. All that we knew was what we, what we felt in our gut about Schuyler.

And, you know, the experts and the doctors, they've been amazing, they've been great for us. But the one thing that they can't do is they can't tell the future. And we want them to, we want to hear that everything's going to be okay.

But the future's not written. You're writing the future, and your child is writing the future. And if you feel like the information you're being given isn't correct, isn't right, you have to go with that instinct. Because nobody knows your child like you do, nobody senses the things that are true and real about your child like you do.

There were two points in Schuyler's life that had we followed the advice we were given, by experts, and really "expert" experts, had we listened to that advice, Schuyler's life would be nothing like it is now. It was the fact that we didn't, we didn't feel right, and that we, we kept pushing for better answers that we finally got them.

So believe in yourself. That's hard, but it's absolutely vital, and in the end, in the end you'll be so glad that you did.

SCHUYLER'S MONSTER: Making a New Kind of Family

Transcript:

Rob: Being in a family with a special needs family member, particularly a child, it's very difficult. It's very hard on a family, it's very hard on a marriage. The divorce rate amongst couples with a disabled child is incredibly high, it's very depressing. And it's... it's hard because I think when you're in a relationship, you know, sometimes when things are hard you want to have that person you can turn to. But when that person is also in that same situation, you think that that's an ideal situation. And you know what? Sometimes it's not, sometimes it's the opposite. Sometimes two people fighting the same demons, they just, you know, it's so hard to be sympathetic, so hard to get out of your own head and out of your own world. And it's very difficult for families.

I think for a family to make it work, for a family to work out the issues inherent in having a special needs child, I think the secret is you just have to take all the narrative that society's handed you, all the expectations, and you just have to blow them away, start with a clean slate. Because the rules for your family and the rules for your child are going to be completely new. They're going to be, they're going to be... You've got to find your way, you've got to find your way, because they're not going to apply to anyone else.

I can write this book. I've read a lot of books, and I'll continue to read books, by other special needs parents. But the thing that strikes me is how every one of these stories is different, every single person has a different reaction, every single person, every single family member has a different way of dealing with it.

And that's fine, that's the way it should be, but you've got to find your own way. Because the standard rules aren't going to help you, they're not going to help you at all. They're just going to make you feel bad, they're going to make you feel like you're doing it wrong. But you're NOT doing it wrong, you just have to find the right way, and no one else can tell you that but you.

So it's hard, it's hard to find that, but it's also very rewarding. I can't think of anything in my life that's challenged me more or has made me grow more as a person. So it's worth it. It's hard, but it's worth it.

And a happy new year...

Tough girl
Originally uploaded by Citizen Rob.

It's weird, 2007 felt like it lasted about thirty minutes.

You know, this time last year, I had a pretty good idea what I'd be doing a year in the future. Turns out, I'd be doing exactly what I was doing then: waiting for the book to come out.

(Forty-nine days, yikes.)

Today, as we get ready for 2008, we have less of an idea what the next year will bring than we have in years. The last time this family's future was so uncertain, maybe five years ago or so, it was because Schuyler's monster was still unidentified and romping through her world with impunity. Back then, we would watch the new year roll over with something akin to dread, with no idea how or even if Schuyler would find her way. We'd sit watching the celebrations on TV, silently pushing down the fear at what the new year might have in store for Schuyler.

On the whole, I like this kind of uncertainty much better. Happy new year, everyone, and thanks for sticking with me this long.

SCHUYLER'S MONSTER: The Monster

It's funny, because we both sort of lose our composure a tiny bit in this one, and yet despite that (or maybe because of it), I think it's my favorite.



Transcript:

Rob: So when Schuyler was about eighteen months old, her pediatrician determined that there was some sort of developmental delay with her speech. She wasn't speaking, she wasn't trying to form words, and it was a concern. Initially she was tested for hearing problems, and she went through a whole series of, of different types of hearing tests that, that ultimately she passed. She went through a lot of different evaluations and tests. She at one point was given a diagnosis of an autism spectrum disorder that, it didn't, it didn't fit. And so she... It took a while for us to finally to figure out what was going on.

When she was three years old she received an MRI scan, and that took the picture of the problem. The problem was a brain malformation, a very rare disorder called polymicrogyria, and it affects the formation of the brain, the shape of the brain, and in her case it affects her speech area. There are other kids who suffer from it with a really wide range of symptoms. Most, some, most kids will suffer some level of mental retardation. Speech, swallowing disorders are common, and almost all kids who suffer from this suffer from seizures. Some of them are pretty bad, too. It can actually, it can actually... kill really young kids who have this. So there were a lot of concerns on a lot of issues.

When she first got that diagnosis, it was hard, it was really hard for us. Because you think you want an answer, you say, "You know, I just want an answer." But sometimes you get that answer, and it's, it's not the answer that you're looking for.

Julie: That was rough because we went into it thinking nothing was wrong, and we'd been told that if something was wrong, they would have called us right away. And so, I think we sat back on our heels and we got comfortable. And we thought, "Nothing, no big deal, we're just going to go in for a checkup." And then as soon as we stepped into the room, you felt, you felt this air of like, something was wrong, something was really wrong.

It just seems like yesterday still. And it was so beautiful outside. It was such a beautiful day. Because I remember, she was impervious, and she just played, she didn't care at all. And I just tried to keep it together, and tried not to cry. We did a lot of crying after that, I know.

I still do, to this day. There are days that are good and days that are bad. And it just, it gets to you, because it's just, it's so unfair. You know, this beautiful little creature, caught under glass. She can't, she can't, you know, maybe that's my charming mixed metaphor, but that's the way I feel like sometimes. She's this beautiful butterfly that's pinned down and caught under glass and she can't fly away. But she tries. She tries pretty damn hard.

SCHUYLER'S MONSTER: Julie's Privacy

Transcript:

Rob: So for years, I wrote online about my life and my life with Schuyler. I didn't write a lot about Julie. She had asked early on for her privacy. I think she thought that the blogging thing, it was like the Truman Show and she was going to be on display and have her life on display all the time, so I respected that. And so she was sort of the silent partner.

Julie: I'm a hermit, and I don't like people who don't know me to know about me, I guess. In person it's fine, but I don't know. I just got a little spooked, I guess?

Rob: The book certainly reflects more of Julie's role in Schuyler's life. She's a fantastic mom, she's incredible. But it's still my story. Julie's story is hers to tell. I would not feel comfortable trying to tell her story. And so instead it's a book about a father, and a book about my experiences with Schuyler, certainly.

Julie: I just feel that fathers need to have a good say in things as well, and it's not just, you know, "Here, you play with the kid and then go do your thing." You really, you interact with her really well, and she really loves you a lot. I think it's nice.

Rob: Maybe one day Julie will tell her story. I think that would be kind of cool.

SCHUYLER'S MONSTER: Being Schuyler's Mom

Transcript:

Julie: She is the embodiment of extraordinary, and I don't say that lightly. She is like the best part of me. She's, she's this amazing person and it's, it's crazy because if you're having a bad day and you see her, it just, pfft, it just makes everything different and she's - she is extraordinary. I mean that's the best way to describe her. Everyone that we come into contact with tells us how amazing she is and it's kind of, kind of an empowering feeling knowing that I helped to facilitate that.

SCHUYLER'S MONSTER: What’s the book about?

Transcript: (Thanks to our good friend Pat!)

Rob: So I guess it's the first question that most authors get: What is your book about? I'm not sure that I have a real easy answer for that. On the surface, at least, it's a story about a little girl, with a crazy, cool attitude, and an independent spirit, but also with a problem, with a serious problem, her monster, that affects her quality of life pretty seriously.

And it's also the story of her father, me, and how I had to learn to become the person that she needed for me to be, even though I had my own insecurities, and even though I was convinced I was the wrong person for the job; but I had to step up and is the story of how she taught me to be the person that she needed and the father that she required. I guess if I had to, if I had to give an easy answer I would say even though it sounds kind of corny, I would say it's a love story. It's a story about love and how sometimes, that's all you have, sometimes that's the only, that's the only weapon you've got against, against a monster – is you've got your love. And it may be dumb love and it may be uninformed and just blind, but sometimes it is enough, at least to get you to the places that you need to be.

So I guess I've written a love story; which I'm not sure what I set out to do, but...

Ho Ho Hum

At last, ultimate power
Originally uploaded by Citizen Rob.

Have a nice holiday, whatever flavor you celebrate? We had a good one, which is nice for us but boring for you. Sorry. I could make some stuff up, because I don't anticipate the next week or so to be filled with much more than relaxation and more children's programming than any adult should be expected to endure without alcohol.

So for the next few weeks, as we get closer to the book release (fifty-three days and counting, by golly), I'm going to feature the videos that Julie and I put together a few months ago for the book site. The production values are pretty bad, but there's love in them videos, you hear me? Love!

I hope everyone's having a nice holiday break. Brace yourself for the new year. I have a feeling that 2008's going to be crazy time.

Christmas Eve 2007

Santa Claus Conquers the Martian

Schuyler & Santa, 2007
Originally uploaded by Citizen Rob.

Schuyler saw Santa tonight, in what is apparently becoming a holiday tradition of going on the 23rd. Well, I'm not sure if it's actually tradition so much as "Oh shit, tomorrow's Christmas Eve!", but I sort of like doing it on the last non-holiday shopping day. I mean, after seeing Santa, what's left? I never understood all the parents who took their kids to see Santa the day after Thanksgiving. If I were a kid, I'd be afraid he was going to forget what I wanted by the time Christmas Eve actually rolled around. I mean, the man never even writes anything down. You're really going to trust some minimum wage elf to jot that down for him?

Schuyler prepared for her audience with Santa just like she did last year, although her list was shorter and weirder this go around. ("I want magic wand and roller skates." I hate to tell you, little friend, but Santa might just veto the skates. That idea has tragedy and the emergency room written all over it.) The wait in line wasn't as grueling as last year, thanks in large part to a balloon-artist elf (she asked for and received "monkey and banana") who also did magic, much to Schuyler's amazement. Pull a ball out of her nose and you've got her undivided attention.

This year, Santa was different from last time. He wasn't in his full-on red suit uniform, but was in his "hanging around the toy shop, throwing back some nog with the elves" outfit. Just like last year, however, Schuyler seemed to tap into some deeper well of attention from him. When she broke out her device and said "Hello Santa!", he asked me if she signed. I said that she did a little, and once they were done, he signed "thank you", to her delight. He listened intently, and his voice cracked a little when he told us sternly "You make sure this little girl gets what she wants!"

(I was thinking, "Dude, you're Santa, you're the one bringing presents, remember? Don't be outing us like that!")

Schuyler wrote out what I thought was supposed to be a list, but the whole thing was in an undecipherable Martian scribble, except for the last few words, "...for me. Love Schuyler" She brought it with her, but in the excitement of seeing Santa, she forgot about it until we were standing at the cashier's station paying. Julie gave it to the cashier elf to give to Santa. She tried to hand it to him, but he waved Schuyler back, sat her back in his lap as they looked at it together.

"Now, you go home and put this under your tree, and when I come to your house, I'll see it and remember what you asked for." She nodded, carefully folded the note and walked reluctantly away, turning to wave goodbye to him a few times.

This was only Schuyler's second visit with Santa, but like last year, it was a good one. Her visit with Santa last Christmas was so special that it made it into the book, but this year was just as good in its own way. This year, she was more confident and relaxed, a big girl who had already met The Man before. No need to be so nervous this year. She and Santa are buds now.

I have no idea how much longer she'll believe in Santa, or how much she even believes in him now. Sometimes she'll act like a pill, and when one of us hauls out the big guns ("Do you want us to call Santa and tell him what a turd you're being?"), she gets genuinely upset, so clearly he's got plenty of power in her world. I sometimes wonder if she'll be too jaded for Santa one day, but I suspect that even after she figures it out, she'll keep playing along, just for her poor father's benefit. I think she probably knows how sad I'll be when Santa's gone, and as she's shown time and again, she won't abide my sadness if she can help it. And she can usually help it.

I don't know. Perhaps Santa is Schuyler's gift to us, and not the other way around.

The Unbirthday Song

Schuyler's Edible Monster
Originally uploaded by Citizen Rob.

In regards to her birthday, I think we really screwed with Schuyler's head this year. First she had her birthday party a few weeks ago, with her best friend from the Box Class. That was trippy enough for her, sharing her birthday celebration with another kid, but as it turned out, the party happened to fall on Julie's birthday as well. So there she was, at a birthday party on her mother's birthday, but the party wasn't for Mommy, it was for Schuyler and her friend, neither of whose birthday it actually was.

Right about the time she managed to wrap her head around that, her actual birthday rolled around last Friday, celebrated with a dinner at her beloved Purple Cow. (Oh Cow, how we adore thee. They even know her by name.) Then yesterday, we went to see my brother and his family so they could have birthday cake with Schuyler and give her a birthday present. THEN we'll be going back over on Christmas Eve for family gift fun, followed by Christmas Day here at home, all of which will involve more gifts and food and whatnot.

January's shaping up to be one long, sad, giftless month. At least she got a kickass birthday cake.

Eight? How can that be possible?

Happy birthday, Schuyler. You mean more to me than I know how to say, although I'll never stop trying.


(By the way, if you've sent Schuyler anything from Amazon, please drop me a line and let me know. They keep coming from third party vendors with no indication of who sent them.)