Schuyler loves mermaids. If you ask her, she'll tell you that she's a mermaid.
We were at Target today, buying much-needed clothes for her, and as we wandered the store, we ended up in the movies section. When she found the dvd of The Little Mermaid, we realized that Schuyler never actually seen it. She'd seen the crappy tv series version, but never the movie itself. We got it for her, because we're swell.
I don't remember when I saw the movie originally; when it came out in 1989, I was in college and, to be completely frank, I was mostly drunk. I doubt very seriously that I was seeing a great many Disney films. Still, it's definitely been a few years since I'd seen The Little Mermaid, long enough that I'd forgotten the deal that Ariel makes with Ursula, the giant, squid-legged, fat villainous drag queen, in exchange for giving her some legs.
Schuyler was already captivated by all the mermaids. But when Ariel had her voice taken away, something occurred to Schuyler, something that in all these years she's never actually come out and addressed with us on her own initiative.
For the first time in her life, Schuyler told us that she can't talk.
She pointed to the television and then pointed into her open mouth while shaking her head. She then pointed to herself and did the same thing. "I don't talk," she said over and over again in her strange, no-consonant language that we can usually understand but which is pretty much Martian to the rest of the world.
She then watched the rest of the movie with deep interest. When Ariel got her voice back, Schuyler turned and looked at us with an unreadable expression, as if waiting for an explanation. I couldn't tell if she was sad or just calling bullshit.
After the movie was over, Schuyler clearly wanted to discuss the issue further. She continued to tell us with her gestures that, like Ariel, she also had no voice. When Julie pointed out to her that she had her device to speak for her, Schuyler very carefully searched for just the right words, typing out "no mouth" at first, but frowning and deleting her unsatisfactory choice. I don't think she knew exactly what she wanted to say, only that she saw something that resonated with her own life, and wanted us to understand.
I felt (and still feel, actually) a heavy sadness about the evening, the same way I do every time Schuyler faces a harsh reality. Still, I can't help but think that something really important and positive happened tonight, even if it was accidental.
That's usually how Schuyler's big moments happen. They sneak up on us, and leave us pondering them long after Schuyler has grabbed the evening's carefully chosen dolls and climbed the ladder to her bed.
I can only imagine what she dreams about. Perhaps she speaks in her dreams, as she does in mine.
33 comments:
It always strikes me what a profound little girl she really is.
It sort of makes me wonder if she can't speak because if she did, what she would have to say would tear the speech from the rest of us, because of just how momentous it might be.
I'll wait for that day.
Beautiful story, beautiful and elegant child. And sometimes I want to shake my fist and demand to know "why" right along with you and your beautiful family.
Rob --
You may have addressed this already, but do you have any sense (either yourself or from others) of when she'll be ready to start learning to type?
It just often occurs to me when reading your site that once she graduates to a keyboard and an IM client, there'll be yet another barrier removed from between her and her peers (and you). Especially, given how much kids apparently spend all their time txting and chatting online.
Sad, yes. But also inspiring that this child of yours is clearly brilliant, profound, and through whatever means, has a lot to say to all of us. I'm listening.
This is so poignant. She is such a remarkable child.
Your book had to stop somewhere, but this seemed ready-made for bookness. I guess it will have to go into HER book. Possible title? "Monsters and Mermaids?" Just saying.
Wow. That's really thought provoking. I know we just recently bought that DVD and that my own daughter (who's 4) absolutely loves it. It's the first film she's sat through, multiple times, without getting distracted by anything else. But for your daughter - what a powerful movie! It certainly would be interesting to know her true thoughts on the subject but, regardless, I think you're right. Something wonderful happened.
I've been reading your blog for quite a while and am looking forward to your book.
A lot of what you write resonates with me because I also have a 'broken' child. She has more disabilities than Schyler, but many of the same issues. My daughter has cerebral palsy and is not able to walk or talk. She also has fine motor skill problems that limit her abilities. She understands very well, but her speech is limited to a small amount of 'martian' and what Ursela in the Little Mermaid calls "body language".
She is much older than Schyler, so she actually saw Little Mermaid when it first came out. She didn't have a communication device to be able to let us into her thoughts, but she had the same kind of "ahh-ha" moment that Schyler had and she was also trying despirately to communicate something to us about her relationship to the Little Mermaid.
Anyway, fast forward to now. She got a communication device in 1996, but her's was more than a dictionary (files and files of words at her disposal, but about as accessible as handing someone a dictionary to communicate with). We are currently in the approval process for a Vantage device like Schyler has and hope to have a Big Box of Communication soon.
And, by the way....
The reason I decided to post was I know of a video that Schyler might like.
There was an animated TV series of the same Little Mermaid characters. It takes place before the 'happy ending', so Ariel still has her fins (and no prince). In one episode, Ariel and another mermaid named Gabriella try to go to the great Starfish to get their wishes granted. Ariel wants feet to dance. Gabriella is a deaf mermaid who wants to speak and sing.
Their wishes are not able to be granted and there is a song about everyone singing and dancing in their own unique ways. The videos of the TV series are out and you should be able to find it if you look on Amazon.
from the parent of one Mermaid to another
It's hard to know what goes on in the minds of our children, and harder still for Schuyler who doesn't have a voice readily accessible to her to tell you.
I bet she talks in her dreams
wow. my jaw dropped right around "the deal". heavy stuff. she's so much older than her age.
oh wow. i hadn't thought about what medley said... when schuyler learns to text.... it will be so amazing! start saving now for the unlimited text messaging, dad. my daughter is 14, has 1000 texts a month, and she speaks!
as always, give my love to julie and schuyler.
I gasped when I started reading this post, somehow knowing where it was going. I think the resonance, that sense of somebody (even a fictional somebody) knowing what it's like, will overpower the sense of sadness in the end. But, what a powerful unfolding of a simple day, huh?
I wonder what would happen if she learned how to type. Would she use it? Write letters of her own? Compose her own silent symphony of words?
I agree — this seems like a lovely and poignant addition to the book — and I hope it makes it into the final edit!
Your lovely girl continues to blow me away... thank you for sharing her with the rest of us.
Wow. I have seen the Little Mermaid more than a few times (hey, I babysit!) and would never have made the connection. What a moment for Schuyler, and for you and Julie.
I agree with the poster above--once Schuyler has a better grasp on spelling/reading/writing, she'll be able to communicate quite "normally" with her friends, since IMing and texting are so much more the norm than the phone these days! I think Schuyler was born at just the right time...even her device isn't totally alien to her peers in the computer generation.
Keep on keeping on. You are clearly raising a wise, wonderful, beautiful girl.
That must have been challenging, yet yet another moment where kids, especially, Schuyler seem to have more wisdom than we give credit for. She is a remarkable child.
Such pain is found in the world . She has questions ~ stay calm address them ... Love her as always .. Its a hard concept to except "life isnt fair " .. My son is angry about his diabetes & that his sister is retarded ~ there's no quick fix. Hmmm ,Actually she needs a friend whom cant speak . Find one ~ good luck ! I know its hard ALL TOOO WELL ...
At our house, the movie is Stuart Little, about the brother who comes home and isn't quite what anyone expected. But I find a happiness in these stories, too...the world is filled with broken people, and maybe that's not so bad. We all fit together in just the right ways.
Ya know, I have no idea about you or your family, but I came across your blog recently when researching for my job, Early Intervention. I added a link to your page from my page, simply because it must be shared. It's beautiful. You have her. She has you. She will make waves and change the world.
The post today gripped me...and you wrote it so well that I felt I was in the room with your family. I only pray for blessings for your family.
Power to her!
I felt a "thud" when I read this. It evokes so many different emotions as I imagine what might be going through Schuyler's mind and how she feels.
One last comment. With how profound that post was, I totally overlooked something.
She has a ladder to her bed?!
What kind of kick-ass laddered bed is this?
(Now that I think about it, it makes me wonder even more what her world is like. Does she have pictures of monsters in her room?)
Wow.... I'm always astounded at how amazing and astute Schuyler is...
Sounds to me like when The Little Mermaid opens on Broadway next fall, someone should take a trip to NY!
Wow. That must have been a hard moment. Schuyler is an amazing little girl. I have enjoyed reading your blog for some time. You write so eloquently that sometimes it takes my breath away. Looking forward to the publication of your book. Thank you for sharing her with us.
Whenever I read your entries about these small, remarkable moments with Schuyler, I think of something I read in an article about an autistic boy in California. He has never spoken, but communicates from time to time using a laptop computer.
Asked once to describe what it's like to be autistic, he typed, "An agile mind in an uncooperative body."
Out of the mouths of babes...
Whoa.
Just: Whoa.
I think you need to add another chapter to that book.
I wish I had something profound to add to the conversation, but there is nothing someone like me, lucky enough to have all the usual functions in place, can say.
But I think you just wrote the forward to your book.
Your writing was very good before, Rob, but I think the process and discipline of the book has allowed your writing to grow into something transcendant.
Schuyler, of course, always WAS transcendant.
I have been reading this blog (well the one before it, and then came here) for a long time. Before you had your little daughter. I haven't commented much, though my heart has been filled so often for you and your family.
This post made me cry, a powerful mix of emotions filling my heart, but it didn't stop there. Overflowed and leaked out. I think your daughter is a beautiful and powerful girl. Her parents thoughtful, loving, and willing to fight for her.
Watching her watch that movie must have broken your heart in a new way.
She's got a lot to do in this world-- you're both helping her prepare herself for that life that is ahead of her, and she's going to give a lot to the world. I don't know how, but she's got a strength and a deepness to her that is almost not child-like.
This from a stranger who doesn't know more than what I read here.
But who has grown to love your child.
From one parent to another, keep doing what you're doing, and know that those times that smash your heart, we feel it too.
Amazing. I also have a mermaid fan at home, and have seen the movie several times now. I know I will always think of Schuyler when I watch it again.
Oh, Rob, I got goosebumps reading this.
Schuyler's concept of herself is in flux, and in her mysterious mind, new connections are being made. Because of a cartoon film, of a fairytale mermaid!
Amazing...
She is a clever girl, and will prevail.
Wow. Just, wow. As parents we watch these amazing kids grow with astonishment, and then (thanks to the awesome internet) we catch the wonders of others' kids, too. I'm looking forward to your book.
Has Schuyler ever seen My Neighbor Totoro? It's a beautiful movie and knowing her attraction to "monsters" I bet she'd really love it. Great movie for little girls and pretty much everyone else too...
lizvelrene
I do have a slight blush when I admit that "this reminds me of something Robert Fulghum once wrote," but...this reminds me of something Robert Fulghum once wrote.
He was overseeing some kids' gathering at a camp or some such, and was getting ready to run a game called "Dragons, Wizards, and Dwarves," which was yet another variation on tag or Red Rover or any such variation on "run and chase each other." After he explained the rules, he told them, everyone had to decide which one they wanted to be, and then the game would begin. He gave them the rules, and then started instructing the kids, "okay, if you're going to be a dragon, stand over by that tree, if you're a wizard, stand over by the lodge..."
As the kids were sorting themselves out, a girl came up and asked him, "Where do the mermaids stand?"
For a split second he considered explaining that "no, sorry, in this game you can't be a mermaid, you have to be either a dragon, a wizard, or a dwarf." But if you know you really are a mermaid, then whose problem is it that the rest of the world wants you to be something different than that?
So instead, he told her, "The mermaids stand right here with me -- the King of the Sea!"
And the mermaid and the King of the Sea had a great time watching the dragons, wizards, and dwarves.
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