May 23, 2011

Who She Is

Tomorrow is Schuyler's ARD meeting. We'll meet with her school team and talk about her year, and plan the goals for next year with a whole new team at a whole new school. These meetings at this school are usually pretty straight-forward; unlike a lot of parents, we've never had to beg for services, after all. Until last year, they were mostly an exercise in formality. We were all on the same page.

It changed, subtly, last spring when the district diagnostician began her now-infamous quest to retest Schuyler's IQ in order to get a lower score, the score she believed would be more accurate, the one that would classify Schuyler as mentally retarded. She did so without dissent from anyone else on the team. Anyone but us, anyway. It was all done with the best of intentions, I know. But last year, we suddenly felt like we saw one little girl and they saw another. It was hard to objectively weigh their opinions, backed by professional detachment, and ours, loaded with overbelief but also a depth of experience unique to parents and family, a familiarity that can't be known to even the most dedicated professional teacher or anyone else who goes home at the end of the day and moves on at the end of the year.

Tomorrow we go back, and we're hopeful that we'll be back to a place where we're all mostly on the same page and we're approaching Schuyler for who she is, not trying to redefine her as something that fits more easily into a box or a checklist or preconceived idea. That's what we hope for. That's also the expectation we try to bring, with a kind of polite fierceness.

None of this changes who Schuyler is. And it only changes who she may become if we let it, if any of us who work for her do so with the intention of making her fit. She HAS to fit, and yet she CAN'T fit. If that sounds like an unresolvable paradox, you're right, you're absolutely right. If it sounds like a familiar unresolvable paradox, I'll bet you're the parent of a different child, a broken child, like ours. Flawed and neuro-atypical, and yet unique and all their own.

Schuyler is who she is. If you want to know her, you don't need a diagnostic tool or years of impressive yet often irrelevant teaching experience. You need only to watch, and listen, and learn.

You'll figure out quickly that she wants friends, she wants them more than anything, even if they are in fact the hardest thing in the world for her to have, more difficult to acquire even than that goddamn marimba.

You'll learn that she has some unshatterable loves. Root beer. Lady Gaga. Dogs. Squinkies. Chick-fil-A. Fake farts in the bathtub. Summer spent in the pool. Painting her fingernails. Sea monsters and mermaids. Maxie. Referring to the police as "The Fuzz", "The Po Po" or "Johnny Law". Rattle-the-windows thunderstorms. Hot-air balloons. Mismatched socks.

You'll learn that she moves like the Tasmanian Devil, never in a straight line, rarely gracefully, and with a casual disregard for the personal space or safety of the people around her. You'll see her boundless energy, and you might envy it even as you worry about the breakables on the shelves around her.

You'll discover how important family relationships are to her. You'll watch her figure them out, like a complex cast of characters, and you'll see how she obsesses when something doesn't fit, like the one dead grandparent she'll never know. You'll see how much she wants the sister than she'll never have, the one she CAN never have.

If you watch Schuyler write, you'll see that she is behind her peers, but you might also see how her mind works in ways not devoid of logic. Sometimes, very very occasionally, you'll see a kind of Martian poetry in her written words.

Schuyler loves disguise. She hangs onto all her old Halloween costumes and mixes their parts. She loves wigs and masks and capes and hats. It is tempting to think that she is trying to be someone else, trying to adopt another identity, but really, I think most little girls her age are exactly the same way.

Schuyler is never jaded. Ever.

Spend some time with Schuyler and you'll find that she loves games, even if she balks at the rules. She plays Uno but hates to lose. She loves Rock Paper Scissors, but if she falls behind, she's likely to pull out something like a fist with her thumb pointed up ("Bomb"), or wiggly, menacing fingers ("Tarantula"). She loves to play "Real or Pretend", especially when there are qualifiers. Mermaids and fairies and angels and dragons are pretend. Dinosaurs are real. Dinosaurs that walk around eating people in the street are pretend. Cats are real. Talking cats are pretend.

Monsters are pretend. Except when they're not. She's ready for those, too.


Amanda Jaksha said...

The fuzz...Muahhhahhhhaaaaahhhhhaa! You are a oll, S!

Amanda Jaksha said...

That should say doll...iPad typing sucks.

kris said...

I think this may be your most beautiful post yet, Rob. Thank you for the glimpse into Schuyler. For the record, you do a graceful job of letting us know all those things about her in your more 'every day' posts... :)

Mary Elizabeth said...

Amen....I know you are not the spiritual type but that was an awesome message...I am forever changed by meeting both of you...

Erin said...


I have a question about the beginning of the post (I hope it's not too intrusive). Since you started talking about the diagnostician's desire to have Schuyler take a test that she believed would classify Schuyler as mentally retarded, I've wondered about her motivations. Would the district receive more money for Schuyler's education if she were classified this way? Would it make more resources available for Schuyler?

If that's the case, I can at least understand why she would want Schuyler to take the test -- she might think it's in Schuyler's best interest. But if not, I'm completely mystified; what on earth is the good of such a classification if it doesn't materially help Schuyler?

Robert Hudson said...

I do think there's a certain amount of "gaming the system" involved, although I believe it is more for the school's benefit than Schuyler's. She qualifies for all the services she needs already, and the possibility of some vague future possible need is not enough to justify the label, in our opinion.

If we're wrong, then we're wrong. I'm a lot more comfortable with that possibility than I am with the idea of being wrong in allowing that label. One of those is a mistake I feel comfortable apologizing for one day, you know?

adequatemom said...

What a terrific post! Wonderful to learn more about who Schuyler is. Well-written, Rob!

Sisi said...

You're very luck that the issue with IQ testing is the only real battle you've had with the school district. I've read your book, so I know you have faced serious issues in other places, but when I read this post it's hard not to get green with envy.

Sabrina Steyling said...

Wonderful post, Rob. Schuyler is such a beautiful person and should be celebrated as such; I know you're not a spiritual person but Schuyler is most definitely a gift - to you, your wife, and to all of us who have gotten to know her through your blog.

(P.S. - love her purple mask! Purple is one of my favorite colors)

KCMichigan said...

I wish you well at your ARD meeting tomorrow.

Something as a parent (of a child on an IEP) and a teacher, I found it helpful to have a picture of the student/child.

Meetings tend to stay more focused on the student and their unique needs instead of 'labels' and fitting (or stuffing) kids into tidy boxes that are on the paperwork. It seems hokey, but really- personalizing (which is what an IEP really is now isnt it?) the whole process makes a big difference.

It is hard to get fixated on numbers, boxes, etc when you have a picture in front of you.

It also allows 'new' team members (new buildings) to realize that behind the mountains and mountains of paperwork- a real kid is represented by the words they write and speak.

As a parent--- I leave the picture right in the middle of the table so that you cant miss it or forget about it the entire meeting. Since that is the focus (not filling a class or specific numbers, classes, etc).

I wish for the best for you and Schuyler. She deserves it.

Anonymous said...


I cheered aloud ("YESSSSSS!") and slapped my desk when I saw your tweet just now about the IEP meeting results.

And then I got over here and read this post and cried at my desk.

I would give anything if we could be there for La Fishmouth to be friends with Schuyler, or y'all could be here. La Fishmouth is 6, yes, but she acts 22. And after about 15 minutes of listening to and watching Schuyler -- she has done this with other kids who have a disability, completely unprompted -- her response would be (I guarantee), "Sssshyeah, stupid grownups are stupid. This girl is the bomb. Let's go do stuff."

And they would. Amen.

You and Julie are RIGHT to hold out. You know your girl and her limitations and her accomplishments and her possibilities. You, of all people, are not going to blue-sky this. And I swear, when Schuyler is grown and famous (and La Fishmouth is her publicist, ha), I will shoot the video while she does the booty dance and says "haters gonna hate" and NAMES NAMES of all the grownups who refused to believe what is and what can be. (If she wants to name some of the Mean Girls, too, that's all right, but they're usually just being their parents all over again.)

We continue to send love from Tennessee.


Anonymous said...

Robert, what an excellent post. My oldest daughter has hearing loss and I'm very familiar with the sandbagging techniques you describe in the post.

I think the intentions are primarily good, as you say, but I also think that there is some awareness of job security involved. After all, if there are more care providers than kids who need services, then at some point cuts are made, etc.

Perhaps that motivation is to some extent sublimated by the care provider, but it would be only natural for that to factor in somewhere.

Snowborber said...

I was reading your blog and I LOVE Schuyler. I like kids with disabilities. I am 11 just like her and I think if I knew her we would be BFFS. When I was 6, I knew this autistic girl and I treated her the only way I knew how-like a child. And they said I was the only one who could really get to her. Maybe I could meet with her on a kids website or vid chat or whatevz. I have some of the same loves as her and I REALLY admire her.

Tell Schuyler that, in the words of Lady GaGa, don't be a drag, just be a queen, wheather you're broke or evergreen, your black/white face, Chola descent, you're Lebonese, your orient, WEATHER LIFE'S DISABILITES, LIFT YOU, OUTCAST, BULLIED OR TEASED, REJOICE AND LOVE YOURSELF TODAY, COZ BABY YOU WERE BORN THIS WAY.

Robert Hudson said...

Heh. Schuyler is convinced that the lyrics are "don't be a crab, just be a queen..."

Snowborber said...

and what disability does she have?

hrobinson1 said...

That is what is difficult when working with people who think differently than others. Since she can't follow the norm of the other children, labels and bias is placed upon her. Instead of focusing on her strengths and trying to reach her through her love of pretend, they continue the box techniques that continue to let children fall between the cracks. I work in group homes and assisted living sites. I have worked with clients with just about any diagnosis you could think of, but I normally toss it to the side and find out what makes them tick. Like one of my wheelchair bound, none verbal clients, loves it when I talk in an accent. She dies laughing so hard she snorts. Or another nonverbal client laughing when I sneeze or cough or pretend like I'm choking. It's the little things and treating people with respect and dignity no matter what and most of all not placing an expectation on them. Typical people don't live with goal markers and lists of they can't do this or that. Why can't we focus on what people with different abilities can do and see that sometimes it's not how smart you are, it's how you go about being the person you are.

Karen said...

I read Schuyler's Monster years before my daughter was diagnosed with ASD and we had our own challenging experiences with the institution that is education. I just came across this post and it makes me wish you lived in our neighborhood, I think Camille and Schuyler would be best friends. Schuyler is so much more than any diagnostic test will tell and it's a beautiful thing that you see who she really is.