October 1, 2008

Monster Giggle


Us
Originally uploaded by Citizen Rob
It's been a rough few weeks for Schuyler.

I mean, let me put that in context, because it's important, I think, to make a distinction here. There was a time in her life when that sentence could have very well been one of foreboding. In the past, a rough time for Schuyler could have been one in which she was back in the hospital for staph surgeries. It could have been one in which she was undergoing tests that freaked her out and hurt her and ultimately led to more questions than answers. And it wasn't that many years ago that a rough patch for Schuyler could have been one in which her teachers in Austin were trying to deny her services or even taking her speech device away from her, muting her and making her feel powerless and weird.

So I'm happy to report that the past couple of weeks have been a challenge for Schuyler for the same reasons that your own neurotypical kids have rough times. I know plenty of broken parents who would give a decade off their lives to have the problems that we've had recently. In a lot of ways, Schuyler's current issues even make me a weird kind of happy.

I told you about the loss/theft/alien-abduction/whatever of Schuyler's glasses. Sure enough, they never reappeared, and she's made do with her much less cool backup pair. The fact that they were taken/mysteriously-vanished/eaten by bears/whatever during her after-school program is just one of a long string of problems we've had with that program. None of them have been serious, not since the summer of '07, known as the "Here's a letter to the district program director explaining what it means to be ADA/IDEA compliant, have a nice day" summer. But still.

When the staff running the program appear to be losing track of kids and their belongings, that's bad for any of the kids. I'm ready to argue, however, that for a nonverbal but socially outgoing and weirdly beautiful (given her father's face) little girl with a fierce resistance to the idea of Stranger Danger and a $7,500 piece of equipment perpetually in tow, those concerns are multiplied. Add to that the fact that one of the staff members offered Schuyler a bag of Doritos (forbidden because of her PMG and its resulting choking danger), RIGHT IN FRONT OF US, and you might be correct in assuming that we've got some concerns, to put it lightly.

Schuyler's performance in school has been rocky, I have to say. I think she's finally settling in, partly as a result, I hope, of the IEP meeting we had recently. Schuyler's in third grade, which is age appropriate for her, but the work load has been stepped up and grades are now being counted for the first time. Standardized tests are being applied, and that means "scary boo" concerns from everyone. If Schuyler's going to keep up, it's going to take a lot of work, and focus, and we went into that meeting expressing our clear expectation of everyone involved in her education. There were some areas that we felt needed to be tweaked and improved, and they seem to have been. Schuyler's new mainstream teacher is young and fresh and happy, and while my McCainesque reaction to that kind of person is usually grouchy and condescending, I have to say that she seems to be on track. Schuyler loves her unconditionally, of course.

So here's where the concerns become little silver linings, even to someone like me who is resistant to taking lemons and turning them into anything but projectiles. The biggest issue for Schuyler to come out of that meeting, and in the occasional note sent home, has been her focus. Not her broken brain, not debilitating seizures, but her attention span. She tends to become distracted easily, and can sometimes be hard to keep on task. It's not her enthusiasm that's at issue; indeed, her sunshiny new mainstream teacher reported that Schuyler frequently raises her hand to answer questions before she actually determines whether or not she knows the answer. She just has a hard time staying on task sometimes.

The other thing we've gotten notes sent home about has been her willful defiance from time to time. And here's where I'm going to be blunt about something that's bugging me a little. We got an email recently explaining how Schuyler was refusing to do what one of her teachers asked her to do, and was being defiant and saying "no" when told to go somewhere, instead just crossing her arms and planting her feet. It was requested that we address this at home.

Another time, we were informed that she was giggling in class, and trying to make another girl laugh, too.

Well, okay. I know it might be in my nature as her father to be defensive on her behalf, although God knows we brought down the hammer when she got home from school. (On the defiance thing, not so much the giggling.) But the thing is, she's eight. She's defiant. Schuyler is praised by her teachers, and by me come to think of it, for her independent spirit and her "take no bullshit" attitude. And I truly love that about her most of the time. When she turns it on Julie and myself, it can be hard to stay positive about her independence. Everyone's happy about her stubborn independence until it gets turned on them. She's like the "loose cannon" character in every cop show on tv.

I guess what I'm trying to say is that I'm not sure that a defiant eight-year-old is really an emergency, email-the-parents-at-work kind of an issue. I think people are afraid to stand up to Schuyler, and that's probably my own fault as much as anyone else's. I suspect I paint a picture of our relationship that sounds very free and easy to you, and in some ways that's exactly right. But Schuyler hears "no" at home a lot, almost a ridiculous number of times every day, and when she says she doesn't want to do something, she hears a variation on "tough shit, do it anyway" an equally impressive number of times.

Most importantly, when she gets shut down, Schuyler almost never throws a fit about it. She never melts down and she very rarely pushes her case beyond the "repeat it a few times and see if the answer changes" phase. She has even given up on getting a "no" from one parent and then asking the other, although I'm sure than maneuver will return. Schuyler is willful and defiant and independent, but she also has an uncanny knack for sizing up the resistance and picking her battles. She's looking to determine her boundaries like any other third grader, and once she knows where they are, she's pretty good about accepting them.

While we're on the topic of notes, a story. When I went to pick her up yesterday, Schuyler had clearly met with some tragedy. Half of her face was red, with angry welts and scratches. She told me that she'd fallen in the grass during recess, and she didn't seem particularly bothered by it. It wasn't really a big deal, aside from the poor timing (school photos tomorrow, book signing on Saturday), but I was annoyed that we didn't receive a note or an email about it. I had to write to her teacher to get details, although in all fairness, there weren't that many to get. The teacher thought that Schuyler would tell us herself, and in fact she did.

Still, in the future, I'd probably rather get a note about injuries than giggling. As a general rule of thumb.

The important thing about all this is that Schuyler's issues these days are rather mundane. Even my issues with her school are Small Stuff; they continue to get the Big Stuff not just right, but dramatically right.

If I could send an email back in time about five years to myself, back when we were stressing over Schuyler's newly identified monster and the potential havoc it might visit on her in the future, and also the anxiety we felt over her abysmal New Haven school situation, 2008 Me would try to convey the hope and the possibilities that stretched before her. I'd tell 2003 Me about the bad things that never came to pass, and about the Big Box of Words, and the teachers and friends in Plano who would change Schuyler's life and put her on a trajectory that we wouldn't have dared to even dream about before.

But if only given one sentence with which to reassure myself, I could do worse than "Dude, her teachers here in 2008? They're worried about giggling..."

19 comments:

Ellen Di Giosia said...

I wonder if her teachers are freaked out by her "defiance" specifically because she's nonverbal. They probably know how to deal with the verbal crap that kids throw at them, but since Schuyler can only express that nonverbally, maybe they're more threatened in a weird way? Huh. What a great story you guys have -- loved the book.

Araby62 (a.k.a. Kathy) said...

She is *so* eight. I got into 99% of my school scrapes at that age too ;)

Anonymous said...

We got a PHONE CALL home at 11:30 AM because our son ate a chicken nugget off a friend's plate and then, when put on the spot, lied about it! School rule = no sharing lunch because of allergies... It's called "the chicken nugget incident..." Everyone was actually excited because he WANTED a chicken nugget and we then put a "504" in place so that in the future he could be given just a few chicken nuggets and not the whole overwhelming meal, but do you think it really warranted a PHONE CALL? And the next day when I found the remnants in his lunch box, he said, "I got in big trouble for eating that..." The kid who doesn't eat got in trouble for eating?! We had a meeting that very day...

But as with you, we feel like we've got a pretty good year going, in general!

Niksmom said...

I have to wonder, too, how much of the whole "disabled kids should be seen not heard" (obviously in the figurative sense) mentality comes into play in these situations, too. Sometimes it seems as if school staff wants our kids to just show up, make nominal progress, and NOT make waves.

I do think some of it is b/c they might not be confident enough in their knowledge of our kids to be able to tell what's part of the disability and what's just age/developmentally appropriate.

Laugh, Schuyler, laugh!

Bluestem said...

Love your blog. Love your attitude. Love comparing notes on our daughters, despite their differences.

Thank you. It's nice not to feel alone.

Karen said...

I love the sentence you'd write yourself. It so sums up everything we need to hear as scared-to-death new parents in this newly diagnosed land. Life went on, things are okay, and your child will be normal. That's really all we want to hear.

Anonymous said...

Your blog is fabulous.

In case this might be useful for purchasing another back-up (or front-runner) pair of glasses for Schuyler, my husband recently bought new glasses from www.zennioptical.com . (I will add that neither of us have any association with the company.) Their prices are incredibly low. The down side is, of course, you can't try them on.

Anonymous said...

I don't like receiving notes about my son's behavior either but I would rather a teacher communicate with me rather than give my kid extra grief at school. But I work for the schools (bus driver) and I realize that sometimes I'll need the parents help when a child doesn't listen/follow rules. Of course I do all I can on my end before involving the parents. At eight, defiance is very normal though. It just gets worse too. ;)

Niksmom, I doubt it has anything to do with her disability. Just as her teacher would expect all her students to listen and do as asked, she expects Schuyler to as well. It has nothing to do with disability, but the fact that in school there needs to be some kind of order which means rules and directions must be followed. Or should be. Now if Schuyler was incapable of following directions due to her disability, that's a whole different matter.

Her spunky attitude is no different than all the other third graders though. They all are firey. "Kaden, come sit in the front of the bus" "NO! I want to sit back here!" "I need you to sit up here Kaden please." *big sigh, rolleyes, stomp foot, slam books down and refuses to budge* What's a bus driver to do? lol

The people who care for our children are encouraged to communicate with the parents of children who are routinely acting out, no matter how normal seems to be. As annoying as it is, it's actually a good thing.

Robert Hudson said...

The people who care for our children are encouraged to communicate with the parents of children who are routinely acting out, no matter how normal seems to be. As annoying as it is, it's actually a good thing.

Huh. That supposes a lot about Schuyler's behavior that I don't think I've given you enough information to suppose.

Well, it's my fault for posting this, I guess. I actually almost didn't, for this exact reason. Most of the time I don't feel like I'm invading her privacy. But right now? I'm definitely having some second thoughts.

kris said...

I want to know how these teachers have time to write/send these notes and emails about every infraction! When I taught 2nd grade (granted, I had 35 kids), the little "knock it off and stop acting 7" infractions were dealt with in the classroom. If it became a pattern or a real problem, sure I'd talk to mom and dad. But giggling? Saying no? That goes with the job. Suck it up, people.

As for the whole young, new, optimistic teacher thing...I was her once--not all that long ago. We mean well and we want to learn...and we love them right back, even when they make us crazy and give us premature grey hairs.

Anonymous said...

I wasn't trying to imply that Schuyler was bad or anything, Rob. I was more talking behavior in general- not specifically Schuyler. More just pointing out a possible explanation for the email. Before I started working with kids in public schools I had no idea how challenging it could be, especially around gray areas like this. I was also just pointing out how communication is usually meant to be a good thing, even in seemingly minor things. It's the teachers you never hear from who I worry about most because you never really know whats going on. It sounds like Schuyler loves her teacher though, so that's great. It also sounds like she's still happily holding her own, and that's also a wonderful thing.

Anonymous said...

Loved the book - love the blog. I'm an optician, and I'd be thrilled to try to replace the missing glasses for Schuyler. If possible -at no charge. I'm not trying to advertise my business here, and it seems kind of tacky to put down an email address, so let me know if/how I can help with a post here.

Karen Harrington said...

Wonderful, wonderful.

Hugs,

K

Monroegirl said...

Yeah, we get that crap, too...funny how they make huge issues out of tiny things and yet can never remember to send home his dirty clothes, communication device, coat, shoes, etc. It's also interesting how they like to assume parents of special needs kids just let their kids run like wild banshees when they're home, with no discipline whatsoever...HELLO?! We can't let up on discipline, ever, because there's no explaining to Mas that it's Saturday and we just chill on Saturdays, no rules required...no, if anything, parents like us have to instill rules and guidelines CONTINUOUSLY, and that is where the exhaustion factor comes in...sigh...I'll step off the ol' soapbox now! People are scared when our kids do things that "normal" kids do every hour...they don't know how to deal with it, so they prefer it not happen at all...a lot of special needs teachers want the kiddos to learn to sit quietly in the room and not make any disruptions...to he// with that! (that is a double-hockeysticks notation) We're just glad Mas is cognitively able to rebel on occasion...even if it's something silly and mundane like refusing to eat the same ol food or refusing to play with the same boring toys. I'm glad you posted this; just reminds me how deep the chasm is between our kids and the "educational" system.

Amanda said...

One of my favorite parts of my job is teaching my kids how to stand up for themselves...how to ask for a little personal space, to tell me they don't feel like talking right now, to ask for one more minute playing....It's a huge part of self expression. the power to say no. Of course something, it's things we have no choice about---we must go to the lunch room as a class, sorry, there aren't enough teachers to stay with you...but I'll try to make it fun for you.

we do sometimes keep pretty ridiculous data on our kids...failure to follow a direction within 10 seconds is deemed "noncompliance"...well sure, but my students are 10-15 years old! what kid that age follows directions that quickly?? Sometimes the rules are stricter for students with special needs, so they don't fall into a pattern of behavior suitable for a child younger than them and get upset when the rules change--in Schuyler's case, though, I imagine she'd understand.

Justamom said...

Again a post I can relate to for sure. Prior to her E surgery, and really until this year, the calls from school were because of shunt headaches and seizures, or odd neuro episodes.
Now the notes and calls are about her refusing to be pulled out for PT/OT, or refusing to follow certain directions. Those notes make me smile because they are so normal, so Becca.
At the same time, I work with a ODD child who is older and it has definitely made me tackle her defiant behaviors seriously NOW at age 7 rather than too late later.
So happy for your time of relief and lightness right now. Eat it up while it lasts!
Great book I am reading (minus the religious references throughout it that I know you're not a fan of) that is helping me with Becca's attitude and behavior - Boundaries with Kids by Cloud.
It's so nice to be able to focus on "normal" parent stuff since the successful E surgery, rather than medical crap.

-Kathleen
Carepage Becca2001

Anonymous said...

Well it certainly is "normal" but yes an 8 year old who says "no" to a teacher gets a note home. And yes right away. At least where i live.

I am not sure why Carmen's comment appeared to offend.

Your post seemed to indicate that Schyler's defiance came not from her diability but a "well within the range of how kids act sometimes." They can be stubborn and indpendent and while these qualities can be wonderful, they may not be tolerated at school in order to keep chaos from erupting.

My point is that an 8 year old who says "no" defiantly and point blank to a a teacher is likely to get a call home asking for the parents to help cease this behavior at school.

If you feel that Schulyer's abilities are what is responsible for her behavior that is one thing.

But if not, you are right that this is your biggest problem with her right now.

Robert Hudson said...

You forgot the giggling. My god, the giggling.

Anonymous said...

I hear you! My second-grader has a "behavior chart" that gets a color each day - green, yellow, or red - to indicate what kind of day he has had and we have to sign it EVERY NIGHT. And it's not just him, it's the whole class. I overheard one mom say she was so sick of it, she wished they would stop with the behavior chart already and only call her if her kid were about to burn down the school! OK, so I might want a call/note a little bit sooner than that, but I think this approach to classroom behavior may be rather widespread - many of the teachers at my son's school apparently do this. All of my son's "yellow" days have involved incidents of excessive talking to friends...I shudder to think what might happen if he were to start with giggling! Perhaps the dreaded "red??" So yes, you are right, this is a very mundane worry to have - hallelujah!