May 7, 2008

Mosaic


Schuyler's bling
Originally uploaded by Citizen Rob
It seems to me that there are a lot of little pieces of Schuyler that make up who she is, so many mosaic tiles that form her picture. Some of them are tiny, others are large and dictate so much of the shape of her portrait. And most of all, they change, frequently, so much so that sometimes I struggle to keep up.

Schuyler loves fairies now. Dragons are sort of old hat, but dinosaurs still have a place in her world, albeit not as central as before. Mermaids have also lost some of their appeal, although she still loves them and will claim to be one from time to time. And King Kong remains beloved.

Schuyler wants me to buy a Mini Cooper.

Schuyler's hair is slowly going back to its natural color (slowly because apparently "temporary" means something different to the fine folks at L'Oreal), and she hasn't requested a recharge in a while. We usually don't color it during the summer anyway, since she spends so much time in the pool, with its chlorinated water. We'll see what she wants in a few months.

When we drive past this one field full of horses and llamas in Plano, Schuyler loses her mind. Her favorite horse is the white one. And she still knows that llamas say "Om? Om? Om?"

Schuyler seems to be losing her love for Hannah Montana. I'd celebrate, except there's no telling what horribleness will follow. For girls her age, Hannah Montana is about as innocuous as it gets without involving Jesus.

Schuyler is the self-proclaimed Queen of Monkeys.

Having had the opportunity to watch Schuyler with kids her age, including her cousins last weekend, I am learning a few things. The most encouraging is that she seems to be unusually well-adjusted emotionally for her age. She never melts down, she's not terribly materialistic and she shares easily.

The most troubling thing I've realized all over again is also the hardest to say, but here it is: in a lot of ways, both developmentally and even, perhaps, cognitively, Schuyler is still seriously delayed. She doesn't use her device as much as I'd like for her to, largely because her verbal abilities are coming along to the point that we can usually understand her, as can many others who spend time with her regularly. But the fact remains that a lot of what she says goes unfathomed, and she needs to use her device much, much more in her daily life. Consider this a resolution to kick her in the ass, motivationally speaking.

Schuyler's love for pudding defies rational thought.

Schuyler likes to play monster games. Her most recent is the Grass Monster, who apparently lives in the grass (well, yeah) and will grab you like the Kraken if you fail to heed stepping stones. She first came up with it while we were waiting outside a restaurant a few weeks ago, and the fiction of the Grass Monster has grown to near epic proportions. We sort of ganged up on her cousin last weekend and convinced him that there's such a thing as the Grass Monster. I would feel guilty about that, except as father/daughter activities go, it was pretty sweet.

Schuyler had a tiny little wart on her hand. She was bothered by it at first, but then decided that it gave her witch powers and became quite upset when it went away. It recently reappeared, and she couldn't be happier.

Schuyler keeps her coins in a bank that looks like a chocolate rabbit. We call it the Money Bunny. She looks for coins all the time now, and covets the Money Bunny like Silas Marner.

Schuyler watches (and sings the theme song to) Kenny the Shark every morning before school. Well, we all do, really. And then she gets on the bus and goes to school, leaving me with my daily dose of separation anxiety mixed with horrible bus crash paranoid fantasies.

Schuyler always points out "the fuzz" when we're driving around.

Schuyler's condition keeps her from doing some sports, like baseball, but interestingly, I think she might be able to really play soccer. As I wrote before, we tried hooking her up with a local "Don't call it Angel League" angel league, but every time we went, they scrapped the soccer and just played baseball. Schuyler said she didn't want to go anymore, and that was that. In the fall, we'll try again with a different, "You can call us Angel League" angel league. I wouldn't be surprised if she could actually play mainstream soccer, and soon. I've seen some of those girls play, after all.

Schuyler likes to wear hoodies now. Her punkitude is unwavering. She still loves her Chuck Taylors but has chilled on the temporary tattoos.

Schuyler finally got to see the Cloverfield monster, thanks to the wildly inappropriate but "interesting in a cautionary tale sort of way" parenting of her father. I gave her sort of the greatest monster moments version, because I didn't think she'd care about a bunch of hipster wannabes at a party and I thought the little monsters would be too scary for her.

(I was right about the party but wrong about the little monsters, incidentally. I forgot about one scene until it was too late, and she loved it. "Wow!" she whispered, before signing "more" until I complied.)

I asked her what she thought of the actual big monster, and she said on the Big Box of Words, and I quote, "I love him. He my friend. He is biggest. He lives in New York City." (She's not one for spoiler alerts, apparently.)

Speaking of Schuyler's lack of fear, there is one exception. She is still afraid of the water. This is hard because she loves going to the pool, but she won't step away from the edge unless she positively has to. Working on this is going to be a summer project for us.

And speaking of the summer, it looks like we're going to skip all the summer day care trauma altogether this year and just rearrange our schedules so that she can stay with us. This is going to mean that she'll come to work with me from time to time. We'll see how that goes. If nothing else, it'll give me more opportunities to harass her about using her device.

Schuyler and Julie are coming with me to Chicago next November.

When we sign books, Schuyler gets bored with doing it the same way every time. At our last signing, she drew a flower for someone.

Schuyler is learning to lie, which is making for interesting times. She's also experimenting with the idea of "accidentally" leaving her homework at school. Trust me, friend. That doesn't work for long.

She and I talked about her monster recently, in a quiet moment together. She said that she doesn't mind the way things are, because her AAC device makes her different, and she likes that. "I love my voice," she said, indicating her Big Box of Words. She seemed genuinely puzzled that I would even ask.

Sometimes, she says, Schuyler is an eagle.

Sometimes she is Ice Girl.

Sometimes she breaks my heart.

Mostly, she's my "why".

20 comments:

Anonymous said...

This was beautiful. I loved it, thanks for sharing.

Solcat said...

My most recent assignment in class was to write a portrait. I won't lie and say that the one I wrote wasn't good. It is. But not like this.
Oh! I finished the book. I did the finish it in one day word gobble when it arrived Monday (no small feat since I was quite drunk from the day's "woot! I wrote the damn portrait..lets drink" activities) and now I'm doing the slower read for the author study paper I have to write soon.
I love the book, I could go on and on about that but I just have to say, I had NO IDEA about those baby head screws. I slacked and skipped birthing classes so I was shocked after 9 years of blissful ignorance that Rymer had something screwed into his head. Wait 'til I tell him!

Robert Hudson said...

Well, keep in mind that a) that was 8+ years ago, and b) I don't think every kid gets the head screw. Just, you know, the lucky ones.

Lucky said...

It's great to hear about how Schuyler's doing. I feel like it's been a little while since you've written directly about her. Thanks for the update!

deb said...

Thank you, thank you, thank you, Rob, for the Schuyler update!

You know we love hearing about all that you, Mr. fancy pants author guy, are doing to promote your awesome book. BUT- we miss the minutiae about the amazing Schuyler.

About your Chicago trip- you said "next" November. Is that '08 or 09? And what/when/where? And can those that love you and Schuyler, and Julie, be at this appearance? AND- do you need a place to stay?

So glad all is going well-

Deb

Kari said...

So sweet! Schuyler has so many sides to her personality (in reality, don't we all?). :-)

Your book was absolutely amazing! I laughed, I cried, I'm going to read it again and again. Thanks so much for sharing your story and Schuyler's story. Your blunt honesty and writing style made me feel as though you were talking directly to a friend (and I felt that that friend was me).

I can't believe I haven't sent you my book yet for yours and Schuyler's autographs. That will be in the mail shortly. :-)

Laurie said...

I am hosting my book club next month, and we're reading your book. Now I have this FABULOUS post script to share at the meeting. I think you're right; Schuyler does seem remarkably well-adjusted. Still, her beauty is almost unearthly- I'm so glad her daddy appreciates how rare and perfect she is...

Robert Hudson said...

You know we love hearing about all that you, Mr. fancy pants author guy, are doing to promote your awesome book. BUT- we miss the minutiae about the amazing Schuyler.

You know, I understand what you're saying, and I try to be conscious of that since I know you're not the only one who feels that way.

I hope, however, that you'll stop and consider for a moment the impact that having a book published has on a family, particularly when the book is ABOUT that family. It's not a permanent condition, and in fact it's beginning to slow down a little, but the fact is, this book IS the minutiae of our world right now, including Schuyler's.

We spent an hour last night signing books for PMG, and she loved doing it. She loves the signings and the media appearances, and she is thrilled beyond belief at seeing her parents and herself on television and in magazines at the grocery store. The book has changed all our lives. Well, of course it has.

One of the frequent criticisms of Dooce.com (a blog I actually enjoy a great deal) is that Heather's focus has changed too much to the sort of fame and success that has entered their lives. Before that, she was criticized for writing about her kid all the time, and before that it was her depression. Now that my book is out, I can see why she's had those changes happen, not to her life but to her writing. It's not these factors interfered with her life. They BECAME her life, or at least important parts of it.

I guess what I'm trying to say is that, like Heather Armstrong and just about any other blogger out there writing about their real lives, sometimes my blog gets a little self-referential. (We're BLOGGERS, and old-skool ones at that. Aren't we supposed to be pathologically narcissistic?) It wouldn't just be weird to pretend that all this excitement isn't happening to us. It would ultimately be dishonest, because it's a major part of our world right now.

I will try to stay aware of that balance, though.

Amy Lynn said...

Rob, what a wonderful post. Thank you.

Karen said...

Hi Rob. I know that it was hard to see that she is not on par with her peers, but as a parent of four, I can tell you honestly that at her age, normal is a huge range. Where she is within that range now is not always an indication of where she will be a year from now, or two.

A year ago Caly swam like a fish while Zaven struggled, now that she's growing so rapidly, she is awkward and slow in the water, and he's much, much faster. On the other hand, she gets smarter by the hour, and as he approaches full-onset puberty, he's losing IQ points like sand through a sieve. Schuyler's abilities will wax and wane as she grows, as will the abilities of all kids. It may take her longer to reach your goals for her, but that does not mean that she can't meet them or even exceed them.

Meanwhile, it was nice to hear her new interests and see that she is happy in so many ways. I'm glad she likes her voice.

Schuyler said...

What a lovely picture of Schuyler. Your comments about her not using the BBOW enough reminded me of an essay by Anne Ohman, I Am What I Am . Maybe it doesn't relate to where you are in your life, but I thought you might enjoy it.

Richard said...

Yay! More Schuyler news! As for her BBOW vs her voice, as long as she can use the Big Box and isn't getting discouraged with it, it's just a matter of preference over which voice she uses. I think the key here is that she loves her voice (BBOW) and doesn't hesitate to use it when appropriate.

I also like that it makes her feel special and cool. She loves who she is, and that's a great way to be.

As for book signings, can I just mail the book, envelope back, and a fairy for Schuyler somewhere? If so, where?

Lauri said...

Beautiful post... I agree that it has been awhile since a post like that has come along... love learning about your girl.


Just finished the book... loved it

Liana said...

Thank you! You wrote a lovely and detailed mosaic of your ever-changing (but always wonderful) daughter. :) I, too, love reading about her!

Kinzie said...

This is a really sweet entry.

I had those little flat warts on my hands when I was a kid, too. They went away forever at puberty.

Why are you going to Chicago? I'm sure you've said before...

Unknown said...

Tonight we celebrated my son’s fifth birthday at the Purple Cow. For those of you not familiar with Plano, this is a fifties type diner in Plano that has a model train running on a track suspended from the ceiling. But the big attraction is that they serve purple milkshakes. Essentially, it’s our kids’ restaurant of choice.

I got there a little bit early before my wife and kids showed up and had a few minutes to have some thoughts to myself. For some reason I thought, “I wonder if we will see Rob and Schuyler here tonight.” It was a fair enough assumption because we often see people who we know every time we eat there.

Well about 15 minutes after my family arrived, my daughter says “There’s Schuyler!” Yup, I’m not lying, I really wondered if we would see her in there. Lauren knows Schuyler because she has been in all of Schuyler’s classes at Gulledge. Lauren and I walked over and I introduced myself to Schuyler and Julie. Pretty much after that Lauren, Schuyler, and my son Scott were inseparable the rest of the time we were in the Purple Cow. They picked songs to play on the jukebox (Lauren always plays YMCA by the Village People). They eventually ditched the boring parents, sat at the bar and ordered purple and chocolate ice cream. I’m not sure who paid for that actually. Rob, please let me know if they charged you guys for my kids ice cream and I’ll pay you back.

This was my first time meeting Schuyler and I have to confess I got excited the way someone does who sees a celebrity. I think because I read the book I built up a mental dialog and wanted to see it played out by the real actors. I asked her if she liked soccer and how many goals she scored this season. She raised 8 fingers. She had a very good season indeed! Lauren’s been playing for two and half years constantly and she has only scored 3.

Schuyler is a riot. She has a lot of energy and she is laughing constantly. When the kids were all sitting down at the bar, I joined them. I enjoy watching Lauren hanging out with kids her own age. I see a side of her that I don’t often see at home. To tell you the truth, I could understand almost everything Schuyler said to me tonight. She has learned to be expressive with her hands which does help. She had her device at Julie’s table but she just wanted to hang out without it.

Julie came by and spoke with us a little bit. I asked her about the device which she showed off to me. I’m a computer programmer so my inner geek came out and I wanted to know all about it. After Julie and I talked I began think about how Schulyer could communicate in the future once she outgrew her device. I actually see her using a Blackberry sized device with a full QWERTY keyboard. This device would have a strong enough speaker so that she others could listen in a crowded room. I hope that as the AAC generation gets older the technology evolves with them.

Anyway, we had a lot of fun. Lauren kept asking me if Schuyler could come over tonight. I told her that Schuyler and Julie were eating with a friend and tonight was not a good night. However, maybe someday soon she can come over and we can have a soccer game.

Anonymous said...

Rob - I loved this. An amazing little girl she is. Thanks for letting us in to your world. - Nicole

Jan said...

As long as Schuyler is using her BBoW whenever she needs to, and she's not flustered by it, don't make a big deal about her not using it when you think she should. You said she caught on to the device pretty fast, right? Well, I think now she's figuring out when she needs to use it, and when she can use her own voice, signs, gestures, scratch pads and pens, funny faces and her wit. She has all of these styles of communication going for her! She's so fortunate to be able to access all of these tools. Let her figure out when to use each of these forms of communication.

I know a bit about this subject, because I also rely on a BBoW for the majority of the time. In fact, I'm using it right now to compose my comments.

Some days my voice is nice and strong where the people in my inner most circles understand me 99.7% of the time. Then there are days when my speech is so bad that even thee people in my intimate family and friends can't understand half of what I'm saying. And, I'm thinking, "Come on people, you're the ones who are suppose to understand me the best!" Now I know when I'm not understandable, but it doesn't stop me from thinking that. On my good days, I leave the device in my room in front of my computer. If I need it to convey a thought to one of my personal assistants, I will ask them to get it. When I'm having a bad communication day I will have the BBoW quite handy.

I almost always take my communication device whenever I leave home. Those few times I have said, "No, I don't want to take it!" I have regretted decision! Invariably, I will run into some old friend, or meet someone interesting that I would wish I had my BBoW.

I learned to communicate well with my communication device in six months. I basically used nothing but my BBoW during those months. It wasn't the easiest thing I ever did, but it sure paid off well. After that I had to figure out exactly when I needed to use the communication device.

I certainly don't need to use the BBoW every time I say something, as well as Schuyler. However, knowing that my BBoW is close by sometimes gives me confidence I need to make my own self crystal clear!

I loved the mosaic on Schuyler!

PeanutandSweetPea said...

Rob, what a great writing. So cool to see the post from eren, just another view of Schuyler that is amazing.

Jan, I loved your perspective. My son is wating funding for his big box of words, which we should know some time this month, or if there is yet another hoop to jump through. I noticed you are in the pacific northwest. We live up here in Tacoma WA. It would be pretty special to have my guy see someone who is also using this technology to communicate. If you would pm me, maybe we could email back and forth? Would love to hear from you.

Earline

Jhianna said...

I love the pictures of Schuyler that you paint for us.