November 15, 2010

Wrong


Feeding giraffes
Originally uploaded by Citizen Rob
"What's wrong with HER?"

I wasn't sure how to answer that question when it burst forth from a grouchy old woman at the grocery store (why is it always grouchy old women at the grocery store?), in response to Schuyler's energetic babbling. (Well, okay, I lie. I knew exactly how to answer her. Let's just say that I neglected to take advantage of the teachable moment and leave it at that.) And honestly, having a good answer isn't a high priority. Schuyler's behavior doesn't typically inspire remarks like that, and there are just some people who enjoy hating at the world around them all the time.

Honestly, I don't imagine it was an actual question so much as a statement. "There's something wrong with your kid." But I wonder how often people ask themselves when they see her, particularly when she's in a talkative mood. I saw the question in the eyes of a Verizon guy who came to my door the other day and found himself face to face with an odd little girl with some incomprehensible questions, presumedly not about the tv/internet package he was peddling. He was polite to her, probably because he was trying to sell something to her father, but it was in his eyes. I think he was wondering what was wrong with her, too. It happens sometimes.

There are a lot of potential answers to that question, but I'm not sure how many of them actually tell Schuyler's story. Her monster makes for a long, unsatisfying answer."Well, you see, she's got a rare brain malformation that robs her of most of her speech, obstructs her fine motor skills, has resulted in developmental delays that inspire some well-meaning but lazy professionals to attempt to label her as 'retarded', causes her to drool sometimes, which of course kicks open the bully door for the shitty little kids at school, and oh yeah, might give her seizures one day. As a matter of fact, I think she may be having small ones now, but I can't prove it without allowing heartless pediatric neurologists to once again rudely glue electrodes to her head so they can again tell us that SOMETHING is happening but they don't know what."

That's a lot of information for the grocery store.

And it's not the whole answer, either. What's wrong with Schuyler? Does she go to school in an especially class-conscious community that places high value on one thing -- conformity -- that Schuyler will never be able to fully achieve? Why, yes. Yes she does. Is Schuyler's father underemployed and slowly going under financially? Is he rapidly losing his faith in his ability to take care of her? Yep. Is she about to leave the relative safety and nurturing environment of elementary school for the Lord of the Flies crucible of middle school? You'd better believe it.

None of those is probably the answer the old woman in the store was looking for, either.

The thing that is wrong with Schuyler most of all is that she lives in an unfair world, one that isn't ready for a kid like her, not completely. And it's not the wags at the grocery store who are the problem, either. It's those of us who love her and care about her the most that make the mistakes that bring her down.

I won't go into the details, but at her after-school program last week, Schuyler was accused of some things that she is actually physically incapable of doing. As we discussed the situation with the on-site director, it was revealed that despite the rather detailed information submitted by us and by the school, a lot of the basics of Schuyler's condition have gone essentially unknown and unobserved by the staff. This isn't just unfair to Schuyler (yes, she needs a speech device to respond to questions when she has been accused of something); it can actually be dangerous to her. (No, she can't eat chips. Yes, they could kill her. Trust me; I've watched it happen.)

I met with the director the next day. Now, I know it sounds like I go into these situations guns blazing, but in fact I almost never do. With a very few exceptions, I have been polite and measured during even the most contentious encounters with any of Schuyler's teachers and staff. This time wasn't any different, but I did make it clear that we were disappointed, and that our faith in the program as a safe place for Schuyler was badly shaken. The program director's reaction, however, was one of genuine remorse, especially when I related that Schuyler was sad and apologetic now without even understanding what she had supposedly done. I thought the director might actually cry. And even though I had done what I needed to do and had expressed exactly what had to be said, I still felt (and feel) badly about the encounter. I wouldn't do it any differently, but I don't actually enjoy being That Guy.

What's wrong with Schuyler? She is surrounded by and in the care of people who love her hugely but imperfectly. Everyone who knows her wants to give her the whole world, but none of us understand the world she's already in. What's wrong with her is us. What's wrong with her is the world.

Schuyler is the best friend anyone could ever want. She's loyal and she loves with her whole heart. She recently made friends with an entire squad of color guard girls at the high school where one of my best friends teaches. She actually became cross at me for referring to them as her friends. "They're my SISTERS," she corrected. She also lists as her friends a quartet of giraffes she fed at the zoo recently. Of course, giraffes are cool, but what she wants most of all is to have friends at school. She's learning, the hard way, that they can be elusive.

Schuyler tries, though. She tries to make peace with a world around her that doesn't quite know what to do with her. She works so hard at presenting herself to the world, almost as if she believes (as I do) that if they could just look at her with fresh eyes, if they could approach her on her own terms without trying to cram her through those horrible bullshit societal filters, then they would see how perfect of a friend she can be. Broken and weird, wholly unique, but a perfect friend.

Unlike me, she believes in the world's capacity to return her love. THAT is what's wrong with Schuyler.

29 comments:

Elizabeth said...

I wish that I could will her the perfect friend. I imagine she's out there, wondering where in the hell Schuyler's been her whole life.

Samuel Sennott said...

Rob,

Thank you so much for how much you share. While the struggles are ALWAYS hard to hear, as one of many working behind the scenes please know that your messages inspire.

In class we have been discussing the systems perspective. It sounds similar to what you discuss, this balance between Schuyler's life and the world she lives in.

KR said...

Thank you so much for all you wrote. It was a wonderful, enlightening post, and I loved it. We know all too well how hard it can be to live in a world that doesn't fit, with Abbi's own story. I really feel for you, and for her, but I also thank you both for sharing this piece of your world with us, and for helping others feel a little less alone.

Kristin
http://pieces.amfas.org/

grandefille said...

... she believes in the world's capacity to return her love. THAT is what's wrong with Schuyler.

That also is what she has in common with every other child, and many of us very naive grown-ups. A friend of mine once said that the "age of reason occurs when you realize that sometimes there's no reason for people to act like assholes; they just do it."

I wish there were some way I could punch out these horrible grown-ups who act as though they've never seen anyone slightly different from them. (That includes abilities, color, size, gender preference, etc.) I know that's never the answer, but sometimes I think that seeing them have consequences for their stupid, rude, hurtful, completely unnecessary actions would be a good learning experience for the kids around them, too. What in the world ever happened to simply shutting up and keeping your stupid to yourself, ignorant people? Or, if you HAVE to say SOMETHING, why in the world not something like "Woo-hoo, honey! Slow down! I know when I get excited sometimes, I can't make people understand me, either." And then YOU have the opportunity to do a little kind education and everybody goes away contented.

When I am queen of the world, I will make this so.

Also, please remember that you are not That Guy. You are The Dad. And making sure your daughter is being educated -- and treated -- properly is always the right thing to do. (You don't need me to tell you that.)

Christopher said...

I have two students who are mainstreamed in my class. This question got asked by several students. It was a difficult hour trying to explain there place in the world and how we could make it better.

I worry all the time that I am failing my students. I hope that if I am doing something wrong there is a parent like you on the other end to let me know. It doesn't always feel great but I know I would fell comfort in the end that my students have the greatest advocates possible, their parents.

Lisa B said...

I just wanted to say .. thanks for being real! I have a child with a "mysterious" genetic disorder and as a bonus she has autism too (pardon me if I don't feel blessed by that additional kick in the gut!) My kid struggles and I don't always take it gracefully... the world can be a real shit place for our out of the box (heck my kid doesn't even KNOW there's a box most of the time!) I loved your book and I love your blog because you are real... you speak the real truth that our days are filled with some real heartbreaking stuff and with unmeasurable joy at the same time. My heart aches for our girls as they try so hard to figure out what the world wants from them and their place in it! Parents like us need the realness of speaking our truth! I had an old lady tell me one time that God knew that he was sending a special child to a me because I was so special and could handle it... I was like "really? in my next life I plan to be a real bitch then!" I really don't need the world to blow sunshine up my butt with flowery prose about how lucky we all are to have our special needs kids. I would like a world to get a clue and stop making everything so much harder than it needs to be!

Hang in there... you are awesome !

Carol Askew said...

I'm so sorry about what happened with the after school program - that just breaks my heart!
I really, really hate that question - "what's wrong with her?". Sometimes it's from someone that's well-meaning, and maybe they have their own family member with an issue, and are looking for some common ground. But mostly it's similar to your experience, where afterward I wish I had some snotty answer prepared. And there is no simple, short answer for us either. Umm, after 10 years, the doctors still don't have a clue why my daughter's brain/muscles prevent her from talking. Yes, it's really true. No, it's not because I didn't talk to her enough when she was little (yes, I actually had someone tell me that.) Ugh.
Not for the first time, I wish we lived close enough for our daughters to be friends. I'm sure any girl would be lucky to have a friend like Schuyler.

Carol, mom to Megan, 10 years old, non-verbal, probably due to undiagnosed genetic syndrome, Dynavox V and Proloquo2go user

ScientistMom said...

I am still struck by the children that take my incredibly disabled daughter under their wings, and I dread the day they stop.

No one has ever asked me what is wrong with my daughter in a rude way (yet), but when they do ask I tell them. I hate the pity looks I get back, but I understand that there is no good way to ask or react.

If we lived closer, Schuyler would be welcome at my house any day. My daughter could use a good friend.

I wish we had a way to do a big play date for everyone. We just need those pesky Star Trek transporters.

Nightfall said...

I think my knee-jerk response would be "What's wrong with YOU?"

Bethany said...

Thank you for your raw honesty and for telling it like it is without the need to paint a rainbow over top. I hated that question "what's wrong with him/her" as a special education teacher. I always wanted to answer that he/she was born different in a f&*#ed up world that demanded conformity. Now that I have become disabled, I get the question "what's wrong with you?". I try to use it as an educational opportunity but more often I can not hold back the smart ass remark that pops forth. The real answer is still the same though, I have the audacity to be different in a f&^%ed up world that demands conformity. I fly my freak flag proudly.

jtj said...

Ugh, please tell me sweet Schuyler did not hear the mean old lady....

Rob Rummel-Hudson said...

No, she didn't. Perhaps more importantly, she didn't hear my response. Although I don't know, I'm not sure I would be too upset if she did hear her old man step up for her.

Miz Kizzle said...

Mean old ladies are such jolly fun! I had one baleful beldame scream at me in the post office because my three-month-old son wasn't wearing shoes.
"How is he going to learn how to walk if he doesn't wear shoes?' she snarled.
Three-month-olds don't even crawl yet," I told her. "But fuck you for your interest."

Meghan said...

My response would be, "I think you meant to say 'hello your daughter is amazingly and utterly herself' so I will let it go this time. Perhaps thinking before speaking isn't in your repertoire. Schuyler doesn't have problem. Goodbye."

Erin said...

I just want to say Thank you to Schuyler. She has opened my eyes and given me hope for my daugters future. My Emmaline is 19 months and was diagnosed with microcephaly at 14 months. With very little help from her doctors and a whole lot of internet searching I have somewhat tried to piece together what is going on in her little head (haha pun intended.) I have no idea what her future holds but seeing how happy and beautiful your daughter is makes me hopeful that my daughter will be that happy as well.

I know I can't make this world a better place for her or for the amazing children like Schuyler. And there are certainly days where it all just seems like to much; and I just want to run to the other room, close the door and scream obscenities into a pillow. (We all do that right?!?) But for as much as I can't fix the horrible things, I can only try to enhance the wonderful things.

Unfortunately whats wrong with the world is the world itself. I know what you mean when you say you see it in their eyes. The awkwardness.
And though its not Emmaline's fault its my fear that shes the one that ultimately will pay the price of their stupidity. And yet shes the one labeled "special needs."

Anyways, I just wanted to say Thank you. To you and Schuyler both.

ANewKindOfPerfect said...

An old biddy in the grocery store once exclaimed "Oh my gosh, what happened to her" as I pushed Emily's wheelchair and pulled the shopping cart. I thought there must be blood somewhere or something, and was shocked to find nothing wrong with my little girl. I said "Nothing happened to her, she looks just fine. What happened to YOU though, because it appears that your think before you speak button is broken".

I hate rude people. I hate that I feel rude replying to them. I am not about to go into my daughter's medical issues with a stranger, why do they even ask?

Richard said...

I know that my initial reaction would be that something's wrong with me, and I would be embarrassed that I can't understand. My first reaction would probably be to ask you to translate, but that would probably be stopped before it got out of my mouth as being rude... which probably leads to a lot of reactions like the FedEx guy's: I don't know what's going on here, and I don't want to speak out of turn.

In essence "I should be able to translate this, but can't parse what's being said."

Lin said...

I struggled with the "What's WRONG with him?" question too. The best response I came up with is a huge smile, a loving Mommy-gaze at my son and the words "Absolutely nothing! He's perfect!" That always shuts them up.

queencallipygos said...

See, if I got the "what's wrong with her" from a nosy stranger, I'd just launch into a graphic recounting of this weird stomach bug she had last week, complete with projectile diarrhea - and I've been worried about that, ma'am, so say, if you're a mother, would you know whether eggs cause that? because she ate ten hardboiled eggs and then puked bright yellow first, and...

Yeah, I'd go for "oversharing something that's completely false and utterly disgusting to scare them off."

queencallipygos said...

....And perhaps this is evidence that it is a very good thing i"m not a parent.

robyncz said...

The answer to have in your back pocket is this: "I assume you're referring to the rare and profound brain malformation that affects her motor skills and makes communication difficult. What exactly is wrong with YOU?"

Robert L Meyer said...

I confess, the first thing that grabbed my heartstrings reading your post, was the sentence about you being unemployed and going under financially. As a father who is constantly worrying about how to pay for the cost of living and raising children, but who does happen to have a (miserable) job, I can't comprehend the level of anxiety and frustration you must feel, because even though the money is gone at the end of the month, we don't have to deal with a rude world asking rude questions about our precious children. I wish I could offer you a job, but that's not in my power now, and you really don't want to live in Michigan again, do you? Actually, I was hoping that your 2nd book would come out sooon and sell about a billion copies.

Rob Rummel-Hudson said...

Thanks. I'm not unemployed, but I'm not making enough money, although for what I do I'm paid fairly.

Steph said...

Although I'm sure it doesn't help you much to hear, I worry about my kid in the same way. It breaks my heart when my sweet and loving three-year-old tells me one of the neighborhood kids is her "very best friend" even as I see said kid slipping her toys into his pockets and mocking her for being a girl who wears Spiderman shoes (Oh! The very idea!). Sometimes my heart just breaks, because I look at her and think, "Oh, Baby, this world is going to chew you up and spit you out." And I know there's not much I can do about it.

Except maybe punch that little neighbor-kid in the face.

Amanda said...

Love to you guys. Giant hug to Schuyler.

Joni Llanora said...

Hi, I'm a newbie form down under and I just discovered your blog (& will be following it too). And my how inspiring it is. I'm raising a child with spina bifida so more or less we're in the same boat. Will get a copy of your book soon. Cheers!

farmwifetwo said...

I have to admit I lost my "polite" button wrt my youngest. Those old ladies look at him and I just look back. They don't back down and I say "Have you never seen a child with severe autism before".

Yeah, petty and b*chy... but somedays I've had enough. Like yours he's happy, social, his new Teacher informed me he's staying all 3yrs in her classroom (Gr 4 to 6) she's not giving him back to his old school.... He's amazing.

Kasy Allen said...

That is so true. My little one has what Schuyler has, so I feel the battle you go through as a parent, and pray that I stop getting those darn stares and remarks about why my child drools and doesn't talk at the age of 10.

But I can tell you this, he has already learned what most adults still haven't... how to get over yourself.

The other day he came home and told me that someone said he was stupid because he couldn't talk. I asked him how that made him feel. He said, "I don't care, I know I'm smarter than him anyways." And with that said, I realized, I worry more about him getting picked on and what the world thinks of him than he ever worries about himself.

Anna said...

What's wrong with my mates-for-life, sensitive-to-everything, caring-and-trusting, demonstrative-and-individualist son is this hideous, god-awful world too. He's seven. The older he gets the more I dread what the world will do to him.