Sunday, November 21, 2010

Life With Unicorns.

Who knew unicorns could be so clumsy?

Not me.

Unicorns being clumsy is but one of the many things I've learned in the past four years, 74 days, 17 hours and 57 minutes (as I write this.)

First, I'll tell you what happened and then I'll tell you what I want to tell you about that and then I'll tell you why I'm telling you about all this, but let me preface it with this:

If you've been reading this blog for a long time, you know of my two youngest kids, Mr F and Mr Bunches.

But you don't know them.

After this, you will know them, the way I know them.

But first, The Story of The Clumsy Unicorns And The Library Pottery.

I took Mr F and Mr Bunches to the library about two weeks ago. We tend to go once a week, because they both like to read the pop-up books that the library has and look at the bearded dragon lizard the library has and walk around the giant oval carpet with the letters-of-the-alphabet border, and I like to take them there because taking the Babies! to the library seems to me to be better parenting than 90% of the other activities I do with them -- because 90% of the other activities I do with them involve me chasing them around the house and eventually picking them up and spinning them until we're all so dizzy we might fall into the grandfather clock that I had to bolt to the wall when they were two.

(It's okay. That clock hasn't worked in years. It's just for show.)

We had been at the library for a while, and Mr F was getting restless. I could tell he was getting restless because he was starting to wander more, going off into the stacks and making me come find him, and, when I could convince him to stay in the kids' area, he'd pick up books and drop them on the floor, a sure sign that he was bored and about to get crabby.

Mr Bunches was still happily reading the book where, if you slide a tab out of the page, various animals will go from black-and-white to full color, so I tried to stay a little longer, sitting Mr F on my lap and trying to interest him in one of the computer games the library has for kids. But he squirmed out and took off his jacket and jogged off to the teen section, and I decided that we'd pack it in.

I got Mr F back and put his jacket back on, zipping him up. He didn't want to wear it any longer. Mr F is a stubborn little boy, and when he decides something, it's very hard to make him change his mind. He'd decided he didn't want to wear his jacket, and I tried to convince him that he should wear it because it was drizzly outside and we were going to probably have to sit outside on the bench for a few minutes and wait for Sweetie, who'd dropped us off while she went to run errands.

While I wasn't relishing sitting outside with the Babies!, I did recognize that they weren't going to last longer and I didn't want to create a disturbance, so I worked on Mr F and got him to get his jacket on and zipped up.

That was no easy task, because I don't speak Mr F's language and he doesn't speak mine.

He wouldn't look at me, which is a bad sign, and he tried to hit me, which is also a bad sign, but I got his jacket on and zipped up and got Mr Bunches to give up on his book and went to check out the book and CD I was taking out.

There's a self-checkout that ordinarily Mr F helps me with. He stood by me, this day, for only a second, and then let go of my hand. As I scanned my library card in, I looked to see what he was doing, and saw that he was walking over to a small display where two little pieces of art, clay pots glazed in bright colors, stood.

I stopped what I was doing and called his name and said "Don't," but he picked one up to look at it.

He didn't mean any harm.

He just wanted to look at the clay pot, which was interesting to him (I'm assuming) not just because it was shiny and bright-colored and unusually shaped but also because at our house, we don't have any knick-knacks around.

Not a single one, unless you count the row of little S'more figurines on a bookshelf downstairs that we leave out because the Babies! like to play with them.

All of our knickknacks-- all our pictures and vases and the older kids' trophies and decorations -- are in closets and up on top of the kitchen cupboards and otherwise stored away in hopes that someday we can set them out again.

Mr F dropped the pottery, and it broke.

With a loud crash.

I had made it to him just as he dropped it and couldn't stop it and immediately bent down and put my arm around him and hugged him to me. Everyone within earshot and eyesight looked, and I'm sure that all they saw was a four-year-old boy and his dad and a broken vase.

What else was there to see, after all?

I'm not sure if they noticed Mr F putting his hands first to his ears and covering them up as people gathered around, librarians and maybe the public, and I tried to keep Mr F close to me as I scooped up bits of pottery and apologized.

"I'm sorry," I said to the nearest lady, as we were joined by Mr Bunches, who edged in there. I held Mr F's hand as about five or six people crowded around us. Through his sweatshirt they couldn't see it but I could feel him tensing up and trying to pull out of my hand.

One lady brushed Mr Bunches aside and he looked up at her and the crowd and ran over to the corner of a small cubicle as we got the pieces picked up and I apologized again and said that I'd pay for the pottery if someone could give me a name to contact, and as I tried to get Mr F out of the crowd.

In a minute or so-- an eternity to me -- the people had faded away and Mr F and I were standing by the self-checkout again, trying to finish up the ordinarily simple-and-quick task so that we could get outside. We got that done, but Mr Bunches was still over in his corner, hidden from view of everyone in the library but me and Mr F.

Mr Bunches was kneeling in the corner, kneeling next to a stool on which he had his face down and head in his hands.

I went over to him and said quietly that we had to get going. Mr F didn't want to go back into the corner and struggled with me, talking to me in words I couldn't understand but got the gist of: He wanted to go, he didn't want to be here, didn't want to be wearing his coat, didn't want to be talking quietly.

I tried to convince Mr Bunches to leave but he wouldn't stand up on his own and Mr F was now tugging at my hand, pulling me farther from Mr Bunches an inch at a time.

I got him sorted out and standing next to me, asking him to "Walk nice," a request I make of him probably two or three times a minute when he and I are out in public.

Mr Bunches still didn't want to stand up. With my free hand, I wormed his hand out from under his face and helped him to his feet.

"Let's go, pumpkin," I said to him.

He pulled free of my hand and ran over to the other piece of pottery and threw it on the floor.

I got over there, holding Mr F, who had immediately clapped his hands over his ears again and nearly pulled my arms out of the socket, and with my other hand I got my arm around Mr Bunches' waist and tried to pull him to me.

"It's okay," I told him, as the same crowd, or maybe a larger one, convened immediately, and I tried to hold both boys amidst the hovering, overly-tall crowd of adults that closed in, making even me feel claustrophobic, and I tried to help pick up the pieces of the second vase, too, until one lady said this:


I looked up and around and tried to see who had spoken but then bit my lip and didn't say anything, I just apologized again and stood up and took the book and CD and held on to both boys and one lady said that they could clean up and I didn't have to worry about it.

Walking slowly, and making sure that both boys held my hand, one to each hand, we left the library. Mr F had to be asked twice to walk nice but we made it outside, where I sat them down on the bench and told them that I expected better of them, that I needed them to behave, that they hadn't been very nice in there, and that if they couldn't be nice then we wouldn't go to the library anymore.

Unbelievable kept ringing in my mind.

And the only reason I didn't speak up right then was because I knew what that lady, the lady who thought it was unbelievable, had seen -- and I knew what she had not seen.

She'd seen two little boys who broke two vases, little boys who appeared to be so poorly parented or improperly supervised or just badly behaved that they could get away with breaking two vases in the span of about two minutes.

She hadn't seen the unicorns.

When Sweetie was pregnant with Mr F and Mr Bunches, when we hadn't yet met the Babies!, I had plans for them -- plans that ranged from "One of them will quarterback the Buffalo Bills to a Super Bowl win while the other becomes an astronaut" to littler plans, like "I'm going to teach them the words to all the songs I like."

To that end, I'd actually made a CD for the Babies! to listen to as we drove around, a CD that I planned to play for them as often as I could when they were little so that they would live those songs, the songs would be as familiar to them as my face and we could sing the songs together as we ran and played and went to museums and taught them how to throw a perfect spiral and watched movies together and did everything else we were going to do.

One of the songs on that CD was the song "I Was Born A Unicorn," by The Unicorns:

I put that song on there not just because it's been one of my favorite songs since I first heard it, but also because it seemed to me, in the months before the Babies! arrived, to speak to how I felt about these newest additions to our lives: they were going to be magical, special additions to our family, little people that Sweetie and I and the older kids had for so long imagined would one day be there, making preparations and buying baby clothes and putting a list of possible names on a blackboard in our kitchen and voting on which ones we'd liked best, people we believed in but hadn't yet met.

They were going to be unicorns.

And now, four years, 74 days, 18 hours and 30 minutes after I first saw them, after I first held them and after I spent the night trying to warm them up because they were so little and so cold when they were born, I realized that's exactly what they are. They are unicorns.

They are unicorns because they are magical and rare and special and wondrous, but also because my boys, like unicorns, don't exist in the world you and I live in.

Mr F and Mr Bunches are autistic.

Our family has known that for a long time, probably longer than we realized, and certainly we've known it for longer than just since the time that the boys were formally diagnosed as autistic. I say that because even though, when the doctors and school teachers first said that the boys were autistic I railed against it and tried to lawyer my, and their, way out of that word, that category, I knew they were right.

I knew it because I'd seen it.

I sat in that first meeting where a group of professionals said my two youngest children were autistic and I argued with them that it might be just a speech delay, that it might be this or that, that they were making progress or weren't quite how the examiners described them, but in my mind, I kept picturing the night I'd watched Mr F and the paper.

When he was about 18 months old, Mr F's hobby was to take paper -- any paper -- and tear it into little pieces, which he would then hold up above his head, one at a time, and drop to the floor. He then would pick up the next one, and drop that one, too. And then the next.

One night, I'd gotten out my video camera and was just going to take some videos of Mr F and Mr Bunches while they played. We already had hours of footage and literally thousands of pictures of them, but I could always use a little more. As I got the video camera ready, Mr F took no notice of me, but kept tearing up paper and dropping it, watching each piece flutter to the ground intently, and then looking at it, then taking the next piece.

I sat and video taped him for a few minutes, doing that, and then I moved closer. He paid no attention to me. As I got closer and closer he still never looked at me. Eventually, I was sitting right next to him and he hadn't looked at me even once as I'd come across the room.

I said "Can I play?"

He didn't react. He just kept taking the next little shred of paper, dropping it, and watching it flicker and spin until it landed on the carpet.

I picked up a piece of paper and dropped it.

He paid no attention to me.

I picked up another piece of paper and held it in front of him and then dropped it.

He paid no attention to me.

And on that day when the school teachers sat us down to explain that the Babies! were autistic and what we could do to help them exist in our world, I kept trying to convince these well-meaning professionals that the Babies! were nothing of the sort, but in the back of my mind was that scene, which I knew wasn't the way things were supposed to be.

I saw all that, and more, and eventually gave in to the diagnosis because no matter how long I spent saying that they weren't, they still were.

But I've always kept it to myself; our family has kept that diagnosis, that word, that label, to ourselves, only our family members and some close friends knowing about it, because I didn't want Mr F and Mr Bunches to be a word.

Sometimes, the very first thing you ever know about someone colors everything you ever know about them, everything you ever think about them. And I didn't want the Babies!' lives to be filtered through the lens of autism. I didn't want them to be those autistic boys. I wanted them to be those boys, and only after people knew them would they then realize that the boys are autistic, which, in my mind, was better, because it's like finding out someone you know has the flu or broke their leg: You don't forever after think of that person as "that broken-leg guy." You think of him as that guy you know, who once broke his leg.

That's why, on this blog and in my life with coworkers and acquaintances, I've never referred to the Babies!' autism before. Someone reading this blog, or listening to me talk about the Babies!, would be hard-pressed to determine that there was anything unusual or very out of the ordinary about Mr F or Mr Bunches, although if you go back and re-read entries about them now (or, if you know me in real life and think about the stories I've told of them) some of the more unusual things will make more sense.

More unusual things like the very limited number of direct quotes from either Mr F or Mr Bunches -- the product, as I said, of them not really speaking our language, of them not existing entirely in our world: they don't talk much, and they talk in our language even less.

Mr Bunches, of the two, can talk quite a bit now, but that's a recent thing, and one that's growing exponentially each day, albeit with hitches. Mr Bunches can recite the alphabet and even sing the alphabet song for you, but he gets tripped up sometimes on new words. For a while there, Mr Bunches thought "milk" was called "more," because when he'd finish a glass of milk and hold it up, we'd ask if he wanted more. Eventually, he surmised that the white stuff he liked to drink was called more, and he'd ask for more even if he hadn't had any yet.

And he can sing the SpongeBob SquarePants theme song for you, if he's in a good mood and wants to sing-- but you have to listen carefully, because he doesn't know all the words, so he fills in his own, but he gets the end of each line right.

Mr F doesn't talk even that much, and is more limited in the sounds he'll make. He knows two words for sure, though. He knows Dad and No. The former sometimes comes out with an accent: Dod, he'll call me, and Dod is usually coupled with No as he tries to get me to not do the thing I'm making him do -- whether that be to stop swimming for the day or to get his pants back on or simply to let me take a break from picking him up by his armpits and swinging him back and forth like a bell while saying "Ding Dong Ding Dong," a favorite activity of his.

That's why you don't see Mr F and Mr Bunches much in the quotes of the day and the like: because they don't have quotes, very much. They have a lot to say -- yesterday, Mr F didn't stop talking for nearly an hour as we left the grocery store and drove home and unloaded the Thanksgiving dinner supplies -- but I don't speak their language and they don't speak mine.

And it's why they don't react the way we do to things; they're unicorns and our world is curious and maybe mystifying to them because they only make occasional trips to our life. They don't see things the way we do, and the things that are important to us aren't important to them. Sweetie showed Mr Bunches a picture of me in my office once, sitting at my desk. "Who's this?" she asked him.

"Chair," he said, focusing on what I was sitting on.

To Mr F and Mr Bunches, there's no distinction between a knickknack and a toy. That doesn't make them so much different than any other two or three or four year old little boy. But what sets them apart is their inability to talk about it -- to understand why the plastic elephant in their toy box is a toy and the metal elephant on Nana's glass table is not -- and our inability to enforce and convey that message. When Mr F wants to play with a table lamp, and I tell him no, he might go right back to it with a singleminded focus because the lamp is interesting and he wants to turn it on and off. When I then tell him no more sharply, it may or may not have an effect. When I then try to give him a time-out, he'll just get up and walk away -- so I have to sit and hold him down in his timeout. Even a spanking, something we rarely resort to, may not work if he really wants to see that lamp.

You can imagine how exhausting that is -- policing someone who not only doesn't want to be policed but maybe doesn't understand he's being policed at all. Imagine if you were a guard at a museum, and a small child who doesn't speak English and had never been in a museum before came in. How would you keep that boy or girl from touching everything? Now, consider if that boy or girl thought that everything was equal, that this thing was no more or less special than that thing, that being able to touch the door meant that you could touch the glass things on display, and consider how you would explain that difference to that little child.

It's hard enough doing that with adults. I was in the Art Institute of Chicago once with Sweetie, and we saw a chair that had a sign next to it that said Do Not Touch and before I even thought much about it I'd leaned over and touched the chair.

Sweetie and I opted not to try. We got rid of knickknacks and clocks and pictures, putting them away because the only alternative was to spend every single minute of every single day constantly stopping the Babies! from picking up the vase of flowers and then dropping it when they were bored. And you can be critical of that and think Well, if you'd just done the work when they were two, then by now they'd know that some things are to touch and some things are just to look at, but you don't know them and also you don't know what else we were focusing on -- you don't see them and us.

So it might seem lazy or unbelievable that we'd opt to simply put away every single little object in our house rather than teach the Babies! what can be touched and what can't, but we didn't see it that way, because we were focusing on teaching Mr F and Mr Bunches to talk -- to communicate with us when they were hungry or thirsty or tired or wanted to play, to know who they were and who we were and who their sisters were, and that wasn't just a matter of sitting down and saying "Mommy" and "Daddy" and "cat," if only because the Babies! don't like to sit, so oftentimes sitting and teaching them requires one person to physically hold them in place while the other teaches. We used flashcards and pictures and books and repetition and games and songs and even sign language to teach them things -- and some worked better than others. Mr Bunches learned sign language watching videos on TV and one day sat me down and taught me how to say tree and swing and help and park and even hair salon, the result being that I had a son who could tell me, via sign language, that he wanted to go get his hair fixed but who couldn't tell me what kind of cereal he wanted to eat.

It wasn't that we didn't want to teach them about not touching things. It was that more than that, we wanted to talk to them.

Which is how I ended up in the library with two boys who didn't understand that pottery isn't for touching, and that picking up pottery can be tricky, and that if you're not careful with that pottery, it's going to drop out of your hands and break and make a loud noise and people are going to crowd around you.

It's how I ended up, then, with two boys who once that group does crowd around you, and starts shoving one of you out of the way, and makes a big scene and confronts you with people who are two and three times your size and who are all strangers and are all talking, just want to get away and make sense of it all, and who might then not want to go finish checking out, and who might want to just sit in a corner with their face on a stool and hide from the people that were loud and scary and who had touched them.

And it's how I ended up, then, with two boys who might, in trying to make sense of what just happened in this world that they only exist partially in, might then try to figure out what just happened by doing it again, something I see them do over and over but which people who don't really see them would have no idea happens: The Babies! will do something, and then do it again to see if your reaction was a fluke, if the fact that the chair fell over or the water spilt or the cat meowed was a fluke, they don't understand cause and effect which maybe works differently in their world... and so they try it again, which is why Mr Bunches, when forced to sit up and still be in the library where there'd been a crash and a crowd and someone had pushed him aside, why he ran over and did it again, because he didn't understand what had happened the first time and didn't know why all that had happened.

Maybe it made him feel better that the same thing happened the second time as had happened the first. Maybe he was trying to make the wrong things from the first time go right this time. Maybe he just wanted to see what it was that had happened, period. I'm not sure. And maybe I should have expected it and been more on guard against it.

But when you really see what happened, when you really know the Babies!, I don't think it's so unbelievable at all, what happened that night.

It's just life with unicorns.

1 comment:

Middle said...

Oh my goodness the boys look so little :) they are the cutest...