Thursday, September 9, 2010

Forever Monsters

Schuyler has been in fifth grade for two weeks now. It's hard to get a direct sense of how it's going for her. By the very nature of her condition, communication with Schuyler always takes place on her terms. More than typical kids, she expresses exactly what she wants and not one word more, and even her expression of what she's feeling and thinking is wildly imperfect. Sometimes she lacks the words for exactly what she's feeling, and other times she lacks the patience to put them together on her device. And often, she's lacks all of the above. I think she gets tired of her monster, more now than ever before.

Nevertheless, some details are coming out. She occasionally says she doesn't like going to school, which is certainly not unusual for most kids but is very much so for Schuyler. She has, until this year, shown an unfaltering nerd's love for school. Now she goes, but dutifully. When asked about new friends that she might be making, she dodges the question by saying she'd rather talk to her old friends. And when asked about the big 5th grade adventure camp getaway that's coming up, she either says she doesn't want to go, or that she only wants to go if we go with her.

Most of all, we've observed how her neurotypical classmates treat her in person, how they avoid her attention and are far too cool for her heartbreakingly naive affections. I find myself sort of hating them. It's wrong, I know, to hate little kids. But there you go. One more shameful confession for the therapy file.

Schuyler is very conscious of how the ease with which she once made friends doesn't always come for her. She's aware of how she really is very different from her NT classmates in ways that perhaps she looked past before. It's happening now, we're watching it happen, and it turns out that despite the fact that I've said it before about other things, THIS is now the hardest part for me about Schuyler's monster. The world is becoming hard for her, and she knows it.

I had an event at work the other day, a back-to-school cookout at the university. I sat and ate my low-bid, state university food service burger (who am I kidding, though; it was delicious), and I watched all these young students, so full of promise, and their faculty, confident and at the tops of their careers. I sat there amidst it all, watching these people as they took hold of their futures and of the discipline that they'd chosen into which to pour their passions, and I felt separate from them.

I know Julie feels this way at work sometimes, too. We listen to the petty complaints or the small victories of people whose lives are so simple, and we know that when they go home to their non-working lives, there aren't necessarily monsters waiting for them. And they don't know what waits for us when we go home, either, our world of uncertainty and of loving this little girl so hard that it hurts, because that's what it does. It hurts, this love, it hurts when you love someone but feel powerless to help them. And the rest of the world, the people we work with and the people we deal with every day, they can't see that.

Watching everyone at this cookout reminded me that this life, this thing that I do and that I think about every minute of every day, this is who I am now. I can try to identify myself as a writer, and I still like to pretend that I'm a halfway decent trombonist, but in reality, that's mostly beside the point. I am Schuyler's father, and her advocate, her overbeliever and her protector. I get it right, and I get it wrong, but it's what I do now. It's my life's work and I get how privileged I am to have it, but since last fall's meeting with the school, we are facing up to the probability that when she's an adult, Schuyler will likely live under our care. This is a rest-of-my-life gig, and that's just the way it is.

There have been people in my life who haven't understood that, people I've had to walk away from in the end. Some have seen this as a life I've somehow chosen to live, and maybe they think I'm not even living it all that well anyway. It's hard to explain to someone who has no frame of reference that I can never walk away, and that when I make mistakes and when I get it wrong, those failures cut deep because I'm afraid that I will never be able to make things right. I'll run out of time, and that will be that. Schuyler will miss her window of opportunity because I didn't get it right, or because I took my eye off the ball and the game just fell apart.

When something goes wrong at work, or when I get a phone call because I'm late making a car payment or paying a bill, or I disappoint someone in ways small and even not so small, I react in the same ways that everyone else does, because that's the world I live in. My car finance company doesn't care, and maybe they shouldn't.

But when someone is clamoring for my attention or waving a bill in my face or wanting a piece of me that I can't give them or expressing how very very much I've disappointed them, they need to understand something that I can't change, as much as I'd like to.

No matter how dire their need is, it's not ever going to be the thing I am the most worried about on any given day. It's simply not. And the things I do worry about the very most are the ones that I can change the very least.

These are the monsters that never go away, the tenacious, forever monsters.

Do you want to hear something really awful? And it is sort of horrible, made more so by the discovery in a recent conversation that Julie feels exactly the same way. One of my worst fears is that one day, hopefully far in the future, but on the day that I die, I'm afraid that my last whispered words, my last conscious thought, will be simply, "But who will take care of Schuyler now?"

Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008).  He is also a contributing essayist for My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press, 2009). His work has appeared in Good Housekeeping and Wondertime.  Robert's adventures with Schuyler can also be found at his blog, Fighting Monsters with Rubber Swords.


  1. Thank you for writing every single word of this. I know it hits so close to home for me and probably so many oother parents that come by here :)

  2. It's so hard when that social and/or developmental gap gets wider. I remember Tim's teacher crying at his 8th grade IEP - the meeting where we decided to make a major placement change for high school. I remember her saying that the other kids, while still friendly and accepting and even appreciative of my son, had passed him up and moved on. They just had less in common now. It's hard to love and hate those peers all at the same time. I always feel like my heart is going to short out and I'll either combust or evaporate. It's hard not to feel left behind as a parent as well. I wrote an off the cuff entry in similar vein one morning this last Spring. (per kid request, we've gone incognito on this beginner blog). Thank you for your articulate and heartfelt post.

  3. Yea, these are all the things I've been thinking about during these back to school daze. SIGH! Thanks for such clear writing!

  4. Such a wonderfully written post. I relate to all of it, especially how our path, our life, is so much more complex than many of our "typical" peers. At times I berate myself for making assumptions about other people's lives...but yes, my kid will always be under our care, and yes, if I miss the boat it could have big implications...whereas for my typical kids the stakes are just lower. So, thank you for this post, and so eloquently validating mine and so many other people's experience!

  5. Fifth grade is a hard year. My son suddenly woke up and realized that he was different, and that that was not good. He spent every recess pacing the playground, back and forth, back and forth, not wanting to be in any one place long enough to be shamed or teased. I hated those kids who didn't have to pace the play yard.
    He's in eighth grade, now, and still quirky, undefined, ahead in some places and behind in others, and still lonely. We don't know what kind of life he will lead, weather he will be independent or not,and I am impatient with people who are moaning about their 8th graders college education fund. They have no Idea that I am not in the same parenting club, that college and independence are not a given. Clueless people who say "well, I couldn't handle it, all the things you've been through", like it was something I signed up for? Signed him up for?
    I try to not think too far ahead, actually. Since we don't know what causes his learning, social, and perceptual issues, we don't know what is likely to happen next, and so I just try to think about the very next step.

  6. I am reading this beautiful essay for the second time and nodding my head. Yes. To all of it.

  7. I could relate to much of this. It is a different world we live in and it's hard not to feel that divide from others. And I so get how you would hate those increasingly 'cool,' sophisticated kids!
    What kind of communication device does she use?
    I think there's a lot of promise for the AAC applications coming out for iPods and iPads. The technology is light and already seen as being part of the mainstream. Look forward to hearing more about Schuyler!

  8. That will be my moms thought on her death bed.

  9. You've perfectly expressed two defining experiential aspects of the parallel world we live in. They are grinding, wearing dilemmas. I wish you, and all of us, luck and grace enough to keep our children well-nurtured and safe through these profound passages.

  10. The future care of our kids, especially our boy, is what keeps me up at night. I can so relate. He is in 5th grade too, and we're talking about pulling him away from the couple of friend he does have to a new school next year.