While poking around the Wondertime Magazine site yesterday (and NOT looking for mentions of my upcoming story, because that would be narcissistic and weird, right?), I came across the story that had originally attracted me to the magazine in the first place. "A Different Kind of Normal", by Charlotte Meryman, detailed the story of the Foard family, of parents Michelle and Jim and their son Jimmy, who suffers from an extremely rare chromosomal disorder called Alfi's syndrome. The story ran in four parts (which was a little maddening since at the time, Wondertime only ran four issues a year), and it's an excellent exploration of the issues that face special needs families, particularly ones where communication is an issue. It's not an exaggeration to say that Meryman's story had a pretty profound influence on how my own book turned out.
What I hadn't seen before, however, were the accompanying videos, which may have been produced after the series ran. Go watch the complete four webisodes. At one point you'll see Jimmy using a slightly older version of Schuyler's Big Box of Words.
The world is full of stories like Jimmy's and Schuyler's. They deserve to be heard.
We went for a walk in downtown Dallas yesterday, not for any particular reason other than to visit the Crow Collection of Asian Art, which Julie had been wanting to see for a while and which was within the budgetary range most suitable for the grand Rummel-Hudson estate. (Free, of course.)
After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.
Schuyler was taken by it immediately.
She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.
Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.
Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.
But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.
Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.
Well, I've wanted to mention this for a long time, but I didn't expect it to happen quite this soon.
The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.
The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.
I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.
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While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.
Book Publishing Party with special guest author Robert Rummel-Hudson (Schuyler's Monster: A Father's Journey with His Wordless Daughter)
My friend Michael Malice has a new site that has a lot of potential for fun, Worst Email Ever: The Internet's Inbox. I made tonight's cut because of an email in which I told him that when I saw the news story about wrestler Chris Benoit murdering his family, I immediately thought of him. (Michael Malice just saw a collaboration of his published, an autobiography of pro wrestler Matt Hughes, so it wasn't an entirely random thing to say.) Michael is responsible for the description-defying Overheard in New York, after all. And how many people make this kind of impression on someone like Harvey Pekar?)
I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.
My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.
Rob: I think a lot of parents with broken children find God, and they find religion. They find a spirituality that sustains them. I certainly understand that, and I certainly respect it.
For me, I've always been an Agnostic, and I think I'm more agnostic now than ever before. You know, Schuyler's situation certainly raises a lot of questions, and it shakes any faith that you might have. But I've never given up on the idea of God. Julie says that she thinks the reason I could never be an Atheist is because then I wouldn't have anyone to blame. And I guess maybe that's true.
I do have a lot of questions that I would put to God about Schuyler, about all the kids like Schuyler, the kids who have it so much worse than Schuyler, about how that could happen. How a God of love and compassion can do that. But I don't have any answers.
My faith is in Schuyler, oddly enough. Watching her struggle and watching her fight. And I don't attribute faith to some invisible person in the sky, but I do feel very strongly when I observe Schuyler.
It's funny. I'm not sure if I believe in God, but I believe in Schuyler.
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?
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.
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.
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.
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.
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.)
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.
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.
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.
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.
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.
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.
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.
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.
