January 7, 2011

My Year of Golden Bees


Monster hat
Originally uploaded by Citizen Rob
So, 2011. What have you got?

I'm not going to lie. 2010 was a rough year for us, in ways too numerous and depressing to list. For me personally, it was a year of things that I desperately wanted to work out ultimately NOT working out, in dramatic failures. For Schuyler, I suspect 2010 was even worse, a year in which her understanding of her own real differentness coincided with her classmates beginning to pull away from her and her strange, childlike ways. It was the year that I felt like her school might have begun to give up on her in some small ways, too. I'll always remember that 2010 was the year that we were asked to allow Schuyler's school to classify her as retarded.

I guess this year was the first time I realized that there are situations in which Schuyler attending school in a district with such a strong special education program might actually work against her from time to time. I have come to believe that there's a mindset that can take place in a strong program, one that suggests that they've seen it all before and know what will work for just about any kid, so if a kid is still difficult to reach, it must be because she simply CAN'T be reached. Schuyler is a very different kid, as I believe every special needs kid is wildly and perhaps sometimes tragically individualistic. Subsequently, I believe it's a mistake for any professional educator or therapist (or parent, for that matter) to believe that the past is always going to inform the present.

But I'm not a professional teacher. I'm a parent, and if I'm once again overbelieving in Schuyler, it is right and appropriate for me to do so. I don't think 2011 is going to see any change there.

It's hard, because one thing has truly changed this past year. Schuyler has a wish, although I'm not sure it's one that she would ever put directly into words, and it is the one thing that she can probably never have. Schuyler wants to be like everyone else. She wants to fit into a grey world of interchangeable children where no one strains to understand her. She wants to choose and build her weirdness for herself. The fact that she is unique in the whole world is not a very very special fact that thrills her now.

It still thrills me, though. It scares me and it haunts me, true, but it also thrills me. Most of all it makes me grateful that I am the one who gets to be her father and her guide in a world that doesn't exactly know what to do with a little girl like Schuyler and her monster. It's a full-time job, it's what I am supposed to do, it's who I am supposed to be, and while it precludes a lot of other things that I can't do or be because of it, it also makes me unique in the whole world, too.

Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.

Schuyler's challenges in this world, every last one of them, now involve her attempts and the attempts of her family and teachers and therapists to integrate her into our world. She doesn't fit, not entirely and sometimes not even mostly, but it is required for her to fit, so we struggle to make that happen. I am not at all sure, I am in fact entirely UNsure, that we are doing her a service by even trying, but there aren't viable alternatives and so we do it. I get the sense that this year will be a crucial one in this questionable but necessary work.

For myself, 2011 must be a year of changes, and the aspects that I can control are the ones within myself. When I go back and read the things I wrote over the past year, I saw a subtle change. I've always been sarcastic, and I've always engaged in dark humor, but this year I think I saw real bitterness in my writing, and a real loss of hope. I need to let go of that, this year more than ever before, because Schuyler is going to need a positive father as she makes some very difficult transitions. I'm going to need to be ready to fight harder than before, and to help her navigate school with a whole new crop of teachers and a whole new set of preconceived notions about what a kid like Schuyler might be capable of.

I need to find my positive center and hold onto it. If you want to call that a New Year's resolution, then fine. That works for me. I will clean my emotional house. I will let go of the things in my life that have been bumming me out, I will simplify my existence, and I will face my failures unblinkingly and then let them fall behind me. I found a quote from a poem by Antonio Machado that I love, a few lines that speak to what I need to do:

"Last night as I was sleeping, I dreamt -- marvelous error! -- that I had a beehive here inside my heart. And the golden bees were making white combs and sweet honey from my old failures."

More than anything else, 2011 is going to be about working to integrate Schuyler into this grey, mean, dumb world. But I need to make sure that I never lose sight of my greater challenge, which is to make this world, by force if necessary, a little bigger and a little more accommodating to her, too. Because I envision a universe that has a place for Schuyler, a world where she can be exactly who she is, and her fellow earthlings will watch her with wonder, and they will say "Holy fuck, that is an extraordinary person."

I like that world. It's the one I live in every day, and I need to remember how lucky I am to do so.

15 comments:

Julia Roberts said...

My wish for you is that 2011 is the year you want it to be and the year that your daughter needs for it to be in order to surpass all of the expectations people in the world have placed on her.

This year is the year that I realized my resolutions are nearly daily when I wake up and try to help my kids, especially my son navigate and integrate into the world.

If there is ever any support I can provide, ranting that we can share I hope you will let me know. Will also be reading along when you have something to celebrate!

I think you are one of the most grounded, insightful fathers I have ever had the pleasure of knowing just a little bit.

Here's to hoping that 2011 that is kind to all of us.

Penny said...

Bravo Rob - eloquently stated. And I believe in Schuyler and I believe it you and I also believe in a world that can open up to her, envelope her and accept her. I do.

Rosanne said...

Rob, here's the good news and the bad news: in her desire to be just like everyone else, Schuyler is exactly like everyone else her age. Yes, she is in an unusual circumstance compared to most others, but most middle-school age kids would do anything to fit in, and yet never feel that they do. Middle school is just a great sucking void, during which time no parent will recognize his/her own child and no parent knows just how to cope with the misery. So you're in the same rotten boat with everyone else there. "Friends pulling away" could be the alternate name for middle school. It happens to everyone, especially to those who dare to be different by choice or circumstance. Now the good news. Your child will be reborn in high school, especially if she goes to a bigger school that feeds in from more than one middle school. Other girls who dare to be distinctive will find her and she will find them. She'll join a club of some kind and she'll have friends, boom. (But it has to be a club that draws the distinctive people, like theater. Hey, if there's a theater club in middle school, hook her up there.) I have two adult daughters and was a high school teacher for 33 years. I may not have known a child with Schuyler's specific condition, but I have known children very much in her situation for one reason or another, and I have seen it happen again and again. I have every faith (in her) that she will be okay once she hits the age when all kids start to be okay. Peace.

Becca said...

This is beautiful. I wish you the strength and energy to carry through.

Miz Kizzle said...

"This gray, mean, dumb world."
Aren't you Little Miss Merry Sunshine!
All snarkiness aside, how can you possibly find your positive center if you perceive the world as a hostile place?
The world, after all, encompasses a lot of... stuff, for lack of a better word. Some of that stuff really rocks. If you draw a circle around yourself, julie, and Schuyler and condemn everything else as hateful and cruel how can you not fall into a bottomless pit of despair and bitterness?
I'm not suggesting you take that frown and turn it upside down but maybe if you try to concentrate on the good things the world has to offer and have a little (dare I say it?) gratitude, you might feel better. And you need to feel better if you're going to be an effective champion for your daughter.
Before you fire off a white-hot snarky reply I want to assure you that I am concerned about you and I feel sorry that things sucked so hellaciously horribly in 2010. Gratitude literally saved my life and there need be no belief in God involved.

Rob Rummel-Hudson said...

"Gratitude" seems like a pretty vague platitude, in this case at least. Gratitude to whom, exactly?

I don't mean this to be "snarky" (god, how I hate that ridiculous made-up word, though), but you do actually sound very "turn that frown upside down". Pretending that the world is something other than what it is might work for some people, and more power to you if it does. But finding a positive center doesn't work if it's built on fluffy lies. Well, not for me, anyway. And I don't think for Schuyler, either.

Rebecca said...

I love reading your blog. As a teacher of kids with a whole variety of special needs it is nice for me to see an absolute honest view of the schools and teachers from a parent's point of view. One of the things that we have continuously celebrated in my classroom (where kids grades 4-8 come and go all day depending on their needs) is each one of our uniqueness or weirdness. It has made for an incredible year in watching my students grow and express themselves in a more honest way. I am amazed at how much more accepted (by peers of all sorts) and happy my students have been this year and attribute a lot of it to them learning to love and express themselves as they are and not as they have thought they should be. I truly hope that Schuyler continues to be her own self and that she finds the other people who will love that person with her. Good luck and keep fighting the good fight with and for Schuyler as you are well aware she deserves it.

Meghan said...

Schuyler blows me away. She makes me not only want to be a better person, better therapist, better with the children I work with...but I also want to do something small to make this world better for Schuyler and those in similar boats. I hope she knows that I don't know the names and stories of any of the kids who are mean to her. They don't have people all over the world rooting for them. But im rooting for her! So take that gray world!

Kathleen said...

Welcome back. I am so very happy to read that you have realized this. Happy 2011!
A couple of my favorite quotes:

"Being happy doesn't mean everything is perfect. It means you have decided to look beyond the imperfections." -author unknown

“The world breaks everyone, and afterward, some are strong at the broken places.” -Earnest Hemingway

Julie Shaw said...

GOD THAT IS a horrible word

Kineret WillowGreene said...

Happy Birthday (a little late) to Schuyler!

I just discovered your book and it is so good! As a practicing Pediatric Nurse and Speech Pathology student, I appreciate your honest parent's-eye-view of both healthcare and special education. As a parent I love how you seem to have always seen Schuyler's true specialness (not in "special needs" sense)and been her advocate for that specialness not to be lost or ignored.

I agree with Rosanne's reply. As I read your post I thought exactly the same thing. Especially for girls, middle school is so hard. The old friendship disappear and a lot of the new ones don't last. But high school is amazingly better, especially with a niche group like band or art or drama. I have seen both my daughter and stepdaughter make the elementary school/middle school/high school transition. Two girls could not be more different and yet both had the same loss of old friends and difficulty making lasting new friendships in middle school only to have things be so much better in high school. Middle school is tough but I think the Schuyler you have shown us has the inner resources to meet this challenge.

Blessings to you, Julie, Schuyler on a year that is better than the last one!

theholdout said...

Wow, I thought Miz Zizzle had a point, but instead of asking her for clarification on her stance on gratitude or even attempting to understand the spirit of her comment, you went on the attack. Good start to your more positive 2011.

Rob Rummel-Hudson said...

I went on the attack? I think it's odd, and also pretty revealing, how when I disagree with someone and explain my disagreement, I am suddenly"on the attack". Raar! Rob's on the attack!

I understood the spirit of her statement very clearly. It wasn't all that complicated. I simply disagreed with it, entirely.

Also, when you wrote this...

"...instead of asking her for clarification on her stance on gratitude..."

...I'm curious as to what you think I meant when I asked this...

"Gratitude to whom, exactly?"

Anyway, if that strikes you as an "attack", you might want to go offline. The internet can be a scary place. Particularly when you post without bothering to even read.

sienamystic said...

That quote is gorgeous, and I have gone to find the poem and shamelessly adopted the same quote. I hope 2011 is better for all of us. I need to let go of my fatalistic streak, and hold on to all the optimism I can so I can help my husband combat his bipolar depression, which has been hitting us particularly fiercely of late.

Beth said...

Well, I don't think any of us think our children are gray and interchangeable. They only all look the same from the stranger's perspective. Kind of the way that your own kids grow slowly and other people's kids seem to grow instantly.

Seriously, middle school sucks ass. I was no more out of the norm than being geeky and bookish, and eighth grade was (on an emotional level at least) the worst year of my life so far. You don't have to triumph in middle school, you just need to survive it so that you can get from childhood to the rest of life. I don't mean to belittle how much Schuyler's differences make this even harder, but feeling sad and alienated and different and alone in middle school isn't a sign that everything's gone irrevocably wrong, it's pretty much SOP.