May 12, 2012

An Undiscovered Country

In the past year or so, Schuyler has made a discovery. It's one I've always known she would make, and always anticipated with a heavy heart. Inevitable, perhaps, for any person with an essentially good heart and a love for the world that it has neither earned nor returned.

Schuyler is learning how to be sad.

She learned in middle school that being surrounded by people doesn't mean you can't be lonely. She learned that people will look at a kid like her and make assumptions that are extremely unkind, assumptions that she can't easily dispel. She learned that her brain can betray her, can leave her confused and dispirited, and that as she grows older, that betrayal only grows worse. The last few times that she's suffered partial complex seizures have left her crying. She had one last night in the middle of dinner with friends that left her sobbing, for no reason she could identify. "I can't stop crying," she kept saying to me, and the confusion in her voice was, for me, perhaps the most heartbreaking of the many bad things about her fucking monster.

Schuyler is coming to realizations about this grand, rough world that she probably already knew, but in the last year or so, she's taken those lessons to heart.

Today I accompanied Schuyler to her middle school band's annual trip to a local water park. I was attending as a parent chaperone, doing things like checking names as the kids got on the bus and handing out wristbands and such, but when the rest of the chaperones' jobs were done and the kids were in the park, my real duty began. The band director, a good and decent person who really does real damage to the crappy reputation of conductors everywhere (I kid, I kid...), recognizes our daughter's challenges, and she works harder than we have any right to expect in order to make Schuyler's band experience a good one. She put me on the chaperone list, I believe, so that I could keep an eye on Schuyler.

Schuyler had a good start to the day as she and a friend gravitated to each other immediately. But I knew we might be in trouble when I saw the girl later with someone else. When Schuyler found me, she was frowning.

"She found another friend," she said. I tried to explain that just because her friend was playing with someone else didn't mean anything bad, and that sometimes people just change up their buddies from time to time, but she wasn't convinced. I honestly had no idea what had happened, but I know Schuyler. She's an amazing person, but she can smother her friends. It's always been a problem and it will continue to be one, until she finds her person, the one who only wants more of her, not less. And that girl or boy will be her soulmate and her forever person, and that will be that.

We sat down for lunch, and were having a pretty good time. Schuyler was fighting a losing battle with a hot dog that she had inadvertently smothered in a toxic strata of mustard, but she was soldiering on. And that's when we heard it, from the table next to ours. A girl, laughing and yelling at her friend.

"You are a retard!"

Schuyler stopped. Her face froze, and she turned to look at the kids. They were oblivious; I don't even think they were from her school. They carried on, not knowing what they had just done, which I suppose is true of the majority of people who casually throw that word around. But I knew. I could see it on Schuyler's face. She turned back to her lunch, her face now a careful mask.

"Are you okay?" I asked. There was no need to acknowledge what had been said.

"I'm not a retard," she said quietly. "That's a mean word."

I tried to explain that the girl wasn't talking about her at all, but Schuyler was absolutely convinced that she was. Beyond that, I explained, not for the first or I suspect the last time, that people who use that word don't have the first clue about who Schuyler is or what she's capable of. That word has nothing to do with her, I said, and people who use it only make themselves smaller, not her. Schuyler sat quietly, not even looking at me when I snapped a photo of her, trying to cheer her up. She listened, but she didn't hear. She'd already heard what she needed to, and not from me, but from one of her peers.

Finally she gave me a lingering hug and said something that I can tell you for a fact that she has never said to me in her young life, yet something that I've said a hundred times to just about any person who has ever loved me, ever. I suppose it was just a matter of time.

"I want to go walk around by myself," she said. "Okay?"

"Okay," I said. And she did, for almost an hour. She was never alone, because I followed her from a distance, watching. Maybe that was the wrong thing to do, but it didn't feel wrong. I know it wasn't the wrong thing to do. Sometimes the hardest part of being a father is when there's absolutely nothing I can do to make it better. Just follow, and let her sadness resonate with my own.

She walked with her hood pulled up, her hands in her pockets, her face cast down, moving sadly through the park and the world like a ghost.

"...her little heart it could explode."

17 comments:

cd0103 said...

Heart breaking ...

Julia Roberts said...

I just don't know what to say, so I'll say I hold you girl in my heart hoping to wish all the ills of being lonely even when you're not alone away from all three of our kids.

Adrienne Welker Moore said...

That blows. I mean that as ferociously as possible.

GB's Mom said...

I am sorry. It is not just a word, you can't help in the moment and I have been there.

Jamie Lea said...

I don't know what to say, except that I am really sorry. I know you are not sure about the whole "God thing," but I hope you don't mind that I am praying for you all anyway.

Shanah said...

Your story and her face break my heart. G-d bless.

Jeff said...

I cried when I read this. My Ava was just diagnosed with Intellectual Disability. She has no clue what is in store for her. Neither do we. She is only 5 right now-and yet my fears are this. Exactly what you wrote about. I feel my heart breaking into a million pieces for you, and for Schuyler, and for Ava. And for me. All our kids want is to have fun, and be accepted, and play. Play like any other child. That's all. To have friends that love playing with them all day, everyday. Like every other child. And just like many children with special needs, they know when the other kids don't want to. I'm sorry Schuyler-I'm sorry Ava. You are so amazing and they just have not realized that yet.

Jim said...

...that comes from living in a world that's so damn mean.

Niksmom said...

This makes my heart hurt for so many reasons. I dread the day my son has the awareness of the words which wound so deeply.

Jackie said...

I wish everyone who casually says that word could read this post. I know so many people who think it's ok, because they are just talking to/around/with friends, but you never know who can hear you.

You did the right thing, she asked for space, and you gave it to her, but you still made sure she was safe.

I'm sorry she (and you) and to have a special day like that turn rotten so quickly.

K Wombles said...

So sorry. ((()))

Bev Sykes said...

It is my wish that every child who faces a challenge in life could have parents as attuned as you are to Schuyler. As sad as this entry is, there is a certain beauty in it because there are things in Schulyer's life which, sadly, are inevitable and you have been there to prepare her for them and to help her when she needs it.

I understand how frustrating it can be to feel powerless to change situations and make it all better, but I remember the brash, outspoken young man who wasn't sure he wanted to be a father and you, Rob, have done an admirable job of it. Schuyler is a very lucky girl.

the three amigos said...

"I'm sorry" doesn't seem to be enough. Big hugs to you and Schuyler.

CarrieT said...

I am so, so sorry, Rob. This makes me so worried about our daughter too, as she grows. Sending hugs and prayers along for your family, especially Schuyler.

Carrie T.

tea said...

This maybe has nothing to do with your blogpost but it came to mind. I saw a lovely little movie on Autism with my 11 year old daughter the other ady and she wanted me to explain what autism is. Not so easy... Anyway, I told her that we all have capacities, let's say from 0-100 and in some things we are really good and are high on the scale and some things are hard so we score less. And we can raise our knowledge of some things a bit but there will always be things that are natural to us and others that are not... Some are naturals at sports but are no good in languages, some are sensitive to other people's feelings others are very competitive and so on...
And then I expalined how the children featured in this little movie had really high scores in imagination, or on learning complicated rules of games, or whatever... I tried explaining Asperger as well... and showing how many of us are rather borderline in certain manias that we have. AND i used my daughter as an example as well... she's a brilliant kid but for example has never enjoyed playing with her friends with toys... she gets really tired when her friend has little patience and jumps from toy to toy... IT IS ALL NORMAL , I said to her, just that we have varying degrees of weirdness in all of us.
I hope my daughter 'gets' it... That we are all different in one way or another... there is no such thing as NORMAL so there cannot be any such thing as abnormal either.
the short movie is worth watching http://www.youtube.com/watch?v=FeGaffIJvHM

There is nothing harder than watching our kid's 'growing pains'... Your daughter knows she can talk to you, and that is the most precious gift you can give her to help her grow.

Eeyore said...

I fight this battle constantly: the students with learning disabilities that I teach history to throw the word around like popcorn and drive me nuts. Previously successful strategies with other high school students with learning disabilities, like having them look the word up so they can see the true meaning have no effect on this group. I wanted to use words to describe them, but I also know these are the kids that will be the first in line to report me to an administrator. But, it just makes me so damn mad.

Jim Howe said...

Wow, I am heartbroken after reading this. (A little choked up too). My middle son, Nathan, has some learning disabilities, and is heading to a new school for 7th grade next year. I am already anxious for him, and what he could potentially face. Thank God you were their for your little girl.