Susan Senator

You would not think, when you learn how my day began, that this would have been one of the best days in a long time. But it was. Even though it began with getting a tiny, sharp splinter deep under my fingernail, and getting a rejection from the New York Times, and also an idiotic letter from a would-be employer, this has got to be one of my most golden of days.

I’ll start small: the weather is a perfect 10. Hot, but not humid, sunny, all is green and blue. I swam in a pool with my friend, and afterward Ned grilled a perfect set of steaks, which we ate with Caprese salad, corn, and wine. My porch is all buttery yellow and aqua. It feels like a summer cookout, sitting on those thick sunny cushions.

And, as they say at the Passover seder, that would have been enough: Dayenu.

Also, my editor is going ahead with my revamped proposal, so it looks like I’ll be able to finally start writing that second autism book in the fall, once the contract is underway, which should happen in August.

Dayenu.

Finally: our meeting with Nat’s school was fantastic. Here’s what happened. Ned and I set out early for the meeting, figuring we would drive by what we thought was his future residence (we had the street name, but no house number). We got to the street and we saw a tall young man walking out the door to a house, and get into a van. “I think that’s it,” Ned said. “It looks like the one we saw when we were first checking out the Residential program.” But we didn’t know for sure.

I saw that the guy was backing out of the driveway, about to back into a plastic garbage can. He hit the can, and as he got out of his car, I took my opportunity. “Is this the ___ House?” I asked. He looked at me for a moment. “This is ____ Road…” If it was the house, he was not allowed to tell me. But I was not going to give up. “I’m looking for the ___ Institute House.”

He broke into a smile. “You must be Nat’s mom,” he said. We shook hands. He is the head teacher at the house. I liked him right away: he had a lot of spark and spunk. “He’s going to love it here,” he said.

We all got back into our cars and drove to the meeting. There were about 10 people around the table. I produced a list of 11 questions and went down the list. We got everything decided and discussed, such as, when we were going to have dinner with the House, how we would get all Nat’s stuff there, how often could he come home, how frequently could they talk to me (“at least daily,” the head teacher said), what did Nat like to do, to eat, etc. I invited all of them to my party, plus they said they would bring his entire House, with the staff: two vans’ worth of guys, descending upon my quiet, stodgy neighborhood. Cool.

All those people putting their heads together, about my son. My heart was just bursting. I wanted to hug all of them. Finally I said, “I gotta get out of here,” so that I could just go and cry.

I realized, driving home with Ned, that this was really probably maybe going to be great for Nat. A house of young guys, running it and inhabiting it. Guys that know how to work and how to play. Guys who are psyched, stoked, and pumped to have Nat move in with them.

I realized that if Nat was going to actually be happy there, that maybe, just maybe, I could be happy with him being there. I could — let go? Did I just say that?

And now, to come up with a design for Nat’s cake. Dayenu!

I’ve got to practice what I preach, which is that everyone has a right to the best possible life they can, and I am including myself. I have been working hard to feel good, even while processing this life-changing situation of Nat getting ready to move out. I can’t just wait on the shore and let the wave knock me down.

So tomorrow Ned and I are meeting with the school and residential faculty so that we can get more of our questions answered for Nat’s move. We want to get busy, do things, get this thing off the ground like superstars. This weekend, Ned and I are going to create a series of Tabblos for Nat to hang on his walls, of all of his favorite people and places. I am going to take a look at his new room and decide how to decorate it.

Decorating my children’s rooms has always been my initial way of connecting with their reality. I painted Nat’s nursery while he was a little lima bean sprouting inside me. I picked out the loveliest periwinkle blue and got a Laura Ashley border and a beautiful pastel-colored crib, and we found a dresser on a street and painted the drawers pink and the rest of it white. We did not know we were having a Natty Boy, so we used all pastel colors.

I just finished looking through an early photo album to find a pic of the room, and there were so many amazing Baby Nat photos I haven’t seen in so long. Oh, my aching heart.

So tonight I’m choreographing the most a propos of songs: Raul Ferrando’s “Yearning.” So lovely, haunting, sad, determined. I think I will begin on the floor, on my knees, one arm extended, moving with the strings. It will be a veil piece, because of its dramatic flourishes. I just practiced it while the boys finished dinner. Ben asked, “Why are you on the floor?”

Why not? Doesn’t he know his crazy mother by now?

I found this lovely email in my inbox this morning, from Nat’s teacher, about his first day of work at a local restaurant:

Hi Sue,
I just wanted to let you know how Nat’s first day went. I was able to go with the job coach and see how he did (I tucked myself away in a corner so I cold see Nat and the job coach but they couldn’t see me). He did AMAZING!!!!! The job coach had him change into his new [restaurant] shirt and visor at school and we made our way to the restaurant. When we got there, there were three other people getting the restaurant ready for the day. Nat shook hands with all of them and introduced himself. Joe (the job coach) showed him where everything was kept and they brought everything he would need to assemble out into the main dinning room. The original plan was to only go for twenty minutes or so to just show him around, introduce him to the staff members, and show him the different assemblies. Well, Nat was so great that we stayed for a full hour. The job coached asked him a couple of times if he would like a break and he said “no break, make boxes”. Nat got to pick out a soda at the end of the shift (he chose orange soda) and we made our way back to school. After we came back Joe commented to me how calm he was and that he seemed very happy because he kept whispering and smiling. – Therese

If only all people (Therese, Joe, Nat) were as dedicated to their jobs…

Yesterday was a gorgeous Saturday. I just had to get out of here, so I told Ned I was going to the Cape just for the day. He had plans anyway, so it was fine with him. Of course Max and Ben didn’t want to go, because “we were just there,” as if that has any relevance! But I knew Nat would want to go, and so I went with just him.

A new thing for me: the talk-free car ride! Nat is not into talking, but he is very interested in all kinds of music, so I could just blare it and sing and he didn’t mind at all. Occasionally he would stop and stare intently, something which Ned and I once called “Tape record mode,” meaning that Nat was memorizing or perhaps merging with the song.

We didn’t have much traffic and got there in two hours (usually it is an hour and a half, pretty much). My aunt and uncle were there, which was nice, although it’s odd to me that my well-meaning aunt shouts at Nat when she is addressing him, as if he were deaf. I should have said something, but I’m not always up to that sort of diplomacy. Nat probably just thought, “Another Loudie,” and went on his merry way.

And merry it was. I have never seen such Stompies and Happy Slappies. His usual circuit was twice as wide, as if he wanted to include even more gawking beachgoers than ever before. (There actually did not seem to be that many rude starers this time; the Special Olympics tee shirt he wore may have helped in this regard.) His waving arms were like a windmill, and his smile was just huge. I slept on and off, waking every few minutes to check where he was, but he was always nearby, either sucking his thumb with a delicious ardor and staring at the churning water, or (literally) jumping for joy on the wide sandy beach. We went in a couple of times, both of us shuddering as the powerful waves slapped our bellies. Mom and Dad showed up an hour into it, and it was good to have conversational company. Dad threw a ball with Nat and Mom and I caught up on the week.

I cooked us a delicious shrimp scampi, and then Nat and I had a quick, uneventful ride home.

My only regret was not bringing boogie boards, because I was afraid I wouldn’t be able to control Nat by myself in those waves. Plus I was feeling wimpy about the cold water, a balmy 61 degrees.

As a gardener I often forget what I’ve planted, and where despite having worked for a considerable amount of time at http://treeservicesbeavercreek.com/. It is practically impossible to remember, unless you are meticulous and keep some sort of map of these things. That would imply that 1) I understand maps; and 2) I can draw aerial views of things.

The way I garden is the way I do everything: by feel, by trial-and-error. I do a lot of research during the fallow days of winter, and then, come spring, I plant whatever I want to in a frenzy of color-love, and hope for the best. If a place in my garden is depressingly blank, I stick something there, never realizing that last year’s July-blooming perennial was meant to fulfill the same purpose. Yesterday I noticed, out of the brown, an unfamiliar purple flower unfurling right in the middle of my purple flower area. WTF?? “I have these weird, gorgeous things that look like anemones,” I told Ned, who is utterly clueless about flowers. “When did I plant anemones –” and then, in a flash, I saw my mother handing me a bag of lumpy brown bulbs last spring. “Hey! My mother gave me a bag of anemone bulbs, I think!” Lo and behold: I have a ton of anemones, all of a sudden.

You may not know this, but I am making a party for Nat at the end of the month, two days before he moves out. I am having close family and as many of his friends — social group and school — that I can. Which ain’t many, although he actually has a lot of friends. (It is very tough getting to the kids in his class; his school is very protective of what they call “confidentiality,” to the point of almost paranoia. In their attempts to be all HIPAA about everything, they make it nearly impossible for our kids to have a social life. Ironic, eh? You can’t simply send in a sheaf of invitations and ask the teachers to put them in the backpacks, the way you can in public school. Well, I am going to try to change that somehow, perhaps in one of my manic phases…)

Yesterday I felt impelled to do something about cracking open Nat’s class. I paged through the very thin school contact list which contains the phone numbers of all families who’ve consented to being contacted by other families. (That is, all families who have the energy to fill out the consent form and send it back to the school. I’m convinced that most of the school’s families would love to be contacted by other families.) I seized upon the one other family from Nat’s class and called.

That mom was amazing. She was right where I was, in terms of our sons. Our boys are the same age. They have similar interests and struggles. Similar vocational interests (her son works in the school and outside in the town; Nat just landed a part-time job at a restaurant in the town) and experiences. We had similar fears about Post-22: how do you get them what they need from the state? Compared to state services, the public education years look like a happy fluffy dream come true.

She was so proud of him, just as he was. She was proud about all of his jobs; and so sad about her inability to meet all his needs and challenges. So down-to-earth, so honest. I have not experienced that kind of resonance with another parent in so long, if ever. Both she and I love the school, despite its flaws, and absolutely love the head teacher. And: her son has lived in the Residences, since he was 15. So she could tell me all about what it is like! We talked for a long, long time. I felt like I’d known her forever, when really, I had only just stumbled upon her, a beautiful bright thing in the middle of an otherwise dark day.

I don’t usually read the Forwarded corny, pop stuff people send me. I prefer to cook up my own. But something about this one made me stop and read. It was not even from a close friend, but someone whom I’ve always liked and admired, and worked with for a time. But getting it from her made me feel really good somehow. What I’ve done is clean up the grammar and the stuff that annoyed me or was unclear, to see if it hangs together for me and my Weltanschauung. I don’t mean to get my sap all over you, but I kind of like it, and I don’t really know why.

People come into your life for a reason, a season or a lifetime. We don’t always know which it is, until much later. Then, hopefully, we feel some peace and understanding about the relationship and its potential purpose.

When someone is in your life for a reason, it is usually to meet some need you have, whether you recognize it or not. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually.

They are there for the reason you need them to be. Then, without any wrongdoing on your part or perhaps inexplicably or at an inconvenient time, the relationship will come to an end. What we must realize is that our need has been met, our desire fulfilled, and their work is done. The prayer you sent up has been answered; but then, it is time to move on.

Some people come into your life for a season, because the time has come to share, grow or learn — somehow — with them. They bring you an experience of peace or make you laugh. They may teach you something you have never done. Or you, them. They usually give you an unbelievable amount of joy. But it lasts only for a season.

Lifetime relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Our task is to accept the lesson and put what we have learned to use in all other relationships and areas of our lives. These relationships are with us for the longhaul.

We are lucky to have any of the three, and hopefully we recognize them when they are with us.

Here is more of the same thing. I am in so much pain about Nat going. I am probably going to run away today, to someplace where I can be soothed.

This is of similar magnitude to the days when he was diagnosed, or perhaps, to the days before he was diagnosed, when there was something I dreaded but couldn’t name, that lay in wait for me. Anticipating his move-out is the same dread, a dread that feels like waiting to vomit.

But this time, it is not about finding out that “something’s wrong” with my child. It turns out nothing’s wrong with my child. I have a name for the challenges he and we face, I have an understanding, somewhat, about how to mitigate them. But as for Nat himself, this is so much about how much I love him, and how much I don’t want him to go. How I can’t imagine living day-to-day without him. Yes, yes, he is going to be “fine;” I do not take that for granted, that is wonderful. Yes, he is going to learn so much and make friends with the guys in his house and have so many more activities than he has here. That is all good. I am lucky. He is lucky. It is a lovely place with lovely people.

But this isn’t about luck, not this bit right now. This is about my pain, a mother’s pain, pure and simple and mixed and complex. I love that guy, even if he rarely speaks to me, even if he has outbursts I can’t understand, even if he makes our lives miserable at times: what kid doesn’t??!! I just love him, and I love his sweet presence, his way of commenting with sing-song talking (I am no longer going to call it “Silly Talk,” that suddenly seems so insulting!). Today I told him I was calling in a prescription to refill some pills and he said/sang, right away, “Huh-pills, hills, huh-peels.” He listens to everything, and if you listen to him, you can detect this.

There is nothing that will take away my pain right now. So many of you have been just so amazingly kind and lovely. So many of you are strangers, yet you offer me these fantastic cyberhugs and love. I am warmed by that, and it helps.

But I have to go through this, like the build-up to childbirth — where the pains get worse and worse until they are just about unbearable. Where there is pain that rips through you, and literally rips you open, blood and screams, so that something utterly important and necessary can happen — this is how I will get to the other side.

Just so you know, it’s not all gloom and doom here in the Senator-Batchelder household. I write about the stuff with Nat because it is how I deal. But sometimes I just have to write about other stuff, like the things that are in my head that make me laugh, or think.

Jim Gaffigan is a fairly new comedian out there, at least he’s new to us. This Manatee bit makes me laugh until I almost choke. Any guy who can channel sea creatures is alright in my book.

And then there’s the Fail Blog. Page after page of “fails.” Fatal typos, weird translations, lapses in judgment. A whole panoply of human error.

And Ben. Yesterday he told me a joke he’d made up: Q: What happened when the ship dropped a bomb into the sea?
A: There was a huge ballast.

We’ll raise our children in the peaceful way we can,
Its up to you and me brother
To try and try again.
–Allman Joy

It’s not that Nat isn’t ready to go. It’s that I am not ready for him to go. We went from zero to 60, just like that. Yes, last summer was hard, so hard, with all of his outbursts, so inexplicable to us. So much would bother him. Ben was so afraid of him, no matter what I did. If I said too much to explain things to him, it would only serve to invalidate his feelings. I don’t know how much fact sunk in. All I know is how he grew to hate Nat, to hate just about everything in his life, to mistrust us, to withdraw into sarcasm, goth clothing, gaming, cynicism, tears.

I am not blaming Nat. I would never see it that way. I don’t blame autism. That is a condition of nerve cells, like a part of his body; it would be like blaming my own belly for having cellulite, or blaming humidity for causing rain. You can see connections and causes, but you can’t blame. It is apart from him, and yet, deeply connected to him, so how could I blame autism? Autism, to me, is not a capitalized word, like some Being. I blame myself, more than anything, because I do not know what to do to provide balance and safety for all of my children, and that is my primary job as their mother.

Why are we created to fail our kids? Why can’t we figure them out? Why can’t love overpower all the mistakes, all the hurts? We are too complex for our own good. And so it twists and cuts so much to watch the repercussions of our inadequacy.

I realized at some point, in my mind, that Nat had to go. He was old enough and could learn more about how to be with others, from others. I had to focus on Ben — and Max. Ben was crying for help. Max, well, no crying, but — I always worry. Is he quiet and accommodating, like Ned, or is he this way because he had to become this way? He was always this way. But is it okay? Like Ned, he seems happy, but like Ned, I always wonder about someone who handles things so internally, so unlike the way I do.

Sometimes a cigar is just a cigar, and sometimes it is much, much more. Still waters, and all that.

With Nat’s school, we now had a place that I could trust, which is saying a lot. I don’t trust easily. It has taken me years to get to know his school and how they do things. I know their flaws and I know their postive attributes. Teacher after teacher seems to fall in love with him, and why wouldn’t they? He’s bright and beautiful, laughs easily, and he’s so funny.

Oh, God, I am going to start crying again! I was just in his room, straightening for the cleaning women (such a strange thing we do, clean so that they can clean). Looking around at the toys, from 18 years of life, the class photos, the art, just sucked my heart downward. The abortive attempts to teach him this and that: sentence-generation puzzles; construction toys; piggy bank; baby doll; math fact flash cards. The toys he used to like, but that now are dust magnets: Funny Bunny (tattered gray rags shaped vaguely like a rabbit); books on tape; Disney CDs.

Nat, Nat, Nat. Baby pictures of you, preteen, chubby 9 year-old. I know, I know, here come the strains of Sunrise, Sunset. Ned says I am just a big pile of sugar. But I’m just saying: it all happened way too fast.

Sorry to be confusing. Nat’s move-out day is actually July 28. Some of my readers thought that because the poem I wrote a few days ago referred to him leaving, that I meant immediately. No, thank goodness, it is not that soon. And yet, it is soon enough. It is a bit of a torment to drag it out, as well. He needs the time to prepare, but I don’t. I will need the time afterwards, to grieve.

I talked to him today about moving to his new home, “the way boys do when they are 18.” He took it in. I don’t know how he felt about it. I think he wants me to make him a special calendar, which I’ll do tomorrow. Something visually different to reflect the new life.

We are all home, post-Cape, hanging around, waiting for things to start: camp, move-out, new book project. I am trying to keep busy, and with four men to take care of, that is not too difficult. Taking care of me comes in drips and drabs, like tonight, when Shadia, one of my first teachers — who is also a costume designer — stopped by. A few weeks ago I had purged my old costumes and had offered these to her, so that she could give them new life. She offered a trade: she would tailor my best costume (the ruby red Eman Zaki) so that it would fit me perfectly, in exchange for a few bedlahs and scraps.

And so she did:

Shadia is a lovely person, a brilliant costume-maker, and a new friend. This costume, remade by rearranging the components of wristlets, anklets, veil, and shoulder straps, is now simply beautiful. It has a brand new life.

It will be my new inspiration, for my latest favorite song, Raul Ferrardo’s Yearning. I will be giving a workshop for friends of my mom, and I will perform for them in the Eman to Yearning. Here is a choreography I found, below:

Healed by love and sleep
Awakened to your voice that told you things.
I marvel at how you comfort yourself
I wonder if you sat down with me for more
I know you don’t want to leave this place of softest blues and spiky greens,
Crows that argue and rabbits that chew, stare, and think, maybe.

This goodbye feels like more to me
A familiar maw of sadness that yawned open as the day closed.
We’re going.
You’re going.
I drink scalding coffee, swallow down a fresh blooming pain
and listen to you whispering sudden cool laughter bubbles in your mouth
And a symphony of birds outside
On our last day.

…All men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.
-Thomas Jefferson, July 4, 1776

Here’s to life, liberty, and the pursuit of happiness!

10,000 years can give you such a crick in the neck!
–The Genie in Aladdin

But 24 years, well, our little party’s just beginning…

We’re on the Cape this week so there’s probably going to be a series of airheaded posts. Nat seems extremely happy (knock wood) and in his element: smiling and punching the air constantly; Joyful Beach Stompies; boogie-boarding; helping carry this and that here and there. He is just a joy, plain and simple. Have you ever felt so happy that you just couldn’t stop moving around? Maybe that’s why I need to exercise sometimes, just to pump my muscles and get my whole body into the imminent happiness pushing its way through me.

Well, that’s Nat. Especially in the morning. To him, it is like the weekend, which means a “No School” day, which means wake up as early as possible and come downstairs and walk, walk, walk. So I usually get up early and try to contain it, so that everyone else can sleep. I reminded Nat gently that he needs to “walk and talk calmly, quietly, because it’s early and everyone else is sleeping.” And so there he was, actually tip-toeing and whispering his Stompies! It was so wonderful and thoughtful that I hugged him. That guy just does what he can.

We bought Max and Ben Rock Band last week, to celebrate a successful and difficult school year for both of them. I had hoped that this would be something that we could all do together, and so far, it is turning out that way. On Tuesday I got up the courage to sing, creating an avatar for myself: Lilia. She looks a little like me twenty years ago. Today I earned enough money to buy her some new, outrageous threads. Suddenly there I was, cybershopping for clothes and wondering if this looked okay or not, while Max, Ned, Hannah, and Ben looked on and laughed.

Max and Hannah switch off on guitar and drums, and they are both really good already. I find the guitar kind of hard to do; maybe it’s because I play a real guitar and I’m doing too much with this mini one (?) Maybe I just suck. Ned tried some drumming the other day and looked like a hot rocker with his long shaggy hair and ultra-confident attitude. Mm — mm, good.

Ben plays drums very well and now has gotten up the nerve to share some of my voice solos, especially the freestyle parts. He’s a little too soft or too loud, though. He shouted right in my ear before and it still feels fuzzy. I have tried to entice Nat to come in and play with us, and he obliges, perched on Max’s bed, but I suspect it is just not his bag, man.

Rock Band is a lot of family fun. I highly recommend it as a way to connect a little with your teenagers. Also, you can pretend to be a rocker, and, come on, you know you want to. Remember the Partridge Family? I was Laurie, my sister was David Cassidy. We played it with our cousins. Rock Band is this generations’s version of Partridge Family. You even get to buy a bus after you’ve earned enough bread.

Once you let the concepts of neurodiversity split open your basic assumptions about autism, the crack just keeps widening. Early this morning I took my coffee and book into the living room, to the couch across from Nat. I slurped and read while Nat sat still, in the center of the couch, whispering to himself into the crisp post-rain air.

My current read is not that great, plus the sky is lit up a promising blue and white, so my mind kept wandering. This is my frequent mental state: running from thought to thought, barely stopping to breathe and really notice them. Because of Nat’s presence, and the imminent lack thereof come July 28, the thoughts churning there were about him. As often happens when I think about this, sadness crept over me.

I couldn’t push away the way I felt sorry for him. Sorry because he was going away, and doesn’t really know yet what it means, to leave us and live somewhere else; sorry because I wondered if he felt that something was afoot, but could not put words to it because words are so elusive for him. Sorry because he didn’t have a book, but just sits there, so often, center-couch, staring ahead of him. And that made me feel bad because I realized that he doesn’t really possess much of a way to escape reality, with pleasurable leisure pursuits. (Leisure activities — or “appropriate leisure skills,” as we have come to call them because of our behavioral training — are what most people eagerly slip into to feel content: reading, listening to music, exercising, writing, gardening, doing crossword puzzles; at least, those are my typical leisure choices.)

Nat can’t escape himself the way I can. But where has all my escape gotten me? So often I run away from my real feelings (maybe you don’t think I do, but truly all you know is what you read here, where I work things out on Precious). I have a huge problem with sitting with feelings, letting them in, letting them merely pass, without acting or pushing away. Trust me, I have had some pretty awful consequences with all my running and impulsive action.

Nat, on the other hand, is capable of simply sitting, literally, with himself, his thoughts, his feelings. He exists within himself, within the moment, just about all the time. And he is okay with it. I realized then, how remarkable that is, how brave, how strong. It was the first time ever that I wanted to be like Nat.

My misplaced pity evaporated and I slunk away into the kitchen, uncomfortable, as usual, with these new feelings and discoveries, and plunged with relief into more coffee and my blog.

I made a party for Ned’s birthday, this past Sunday. It was a real mixture of worlds: his work friends, our neighborhood friends, my bellydance friend, some of our oldest friends, and some very new ones, too. All their kids, too, which Ned specifically requested. I tried to have the food be stuff that would please everyone: fried chicken, curried chicken salad, salmon nicoise, and of course, an excellent cake. Photos by Pete.

The cake was not homemade, because the design was too complicated, and too important. And a surprise. So without Ned’s expertise, I did not feel confident that I could make Betty Crocker work out just right. So I assigned the whole thing to Party Favors, a local bakery that makes the most fabulous cakes ever. (They are the ones who made my bellydancer birthday cake, complete with a cake tent, cake palm trees, and a cake desert. The bellydancer was a frosted tiny figurine.) This is an Aptus cake, based on a fractal image that Ned generated with some code he created. (This kind of software doodling is one of Ned’s hobbies. He was the first person I ever met who did math for fun. His hobbies, in the Penn facebook, were something like this: Recreational math, juggling, and other circus skills.”) The name “Aptus” actually is from the words “Apple Tush,” which is what Ben called the shape when he first saw it, as a baby. You can see that it does, indeed, look like an Apple Tush.

The party was terrific; the weather pretty much cooperated. And just about everyone we invited came, and they did bring their kids: around 35 people. I dragged out all of our classic kiddie vehicles for them to play with, and it was so great seeing the old toys out again, which hosed off very well after having been stored in the gross basement all this time. The little Playskool wagon is 17 years old now. This wagon was one of Nat’s first toys, and as a one-year-old, he had delighted in rolling it back and forth, watching its steady and then uneven movement. As a teeny baby he had actually started singing a little tune every time he rolled it, and eventually I realized that this tune was a musical illustration of the the rolling of the wagon. Never, never doubt that there is a lot going on inside the head of an autistic person. Whether they choose to or are able to share it with you is another thing altogether.)

I took out Max’s Big Wheel, now fifteen! He had been so proud of it. Ben inherited it, of course. Ben’s Cozy Coupe was there, too. Or maybe it was Max’s. So many boys went in and out of its door, checked its little mirror for who knows what, turned its impotent ignition. And now, my friend Pete’s adorable little girl tried out those vintage wheels.

I forced Ned and Max to help me set up a volleyball net. Ben actually played volleyball with some of the kids. Nat hung out the entire time, gobbling up all the chips and salsa (when I tried to add different chips to the remaining chips, he grabbed two handfuls of the remaining chips, carried them to the dining room table, and ate them. Note to self: never mix chip types).

One of the stereotypes about autism I am guilty of perpetrating is that there is a deficit in intuitive knowledge. I have observed in Nat over the years an apparent lack of knowledge about things that I thought were “common sense.” But the more I live with him, the more I understand that with autism, the differences between one person and another are not about my world vs. your world. There is no retreating into another world. The closedness we observe may not be what we think. I have come to believe that there is not “surroundings dumbness” (my term) anymore than there is a “mind-blindness.” As satisfying it was for me to believe in this condition in Nat, I now realize that the blindness was on my part. While it is true that Nat has had to be taught many things that I or my other two sons do more naturally, like reading others’ expressions, it is not because he doesn’t know how to tune into others. It’s more because he does not realize that this practice is important. Or he’s not ready to. They are subtle distinctions, but I believe they are absolutely important ones.

I had that sense about him even when he was very little; that his way of being was not necessarily about a deficit, as much as a lack of desire. Not a willful refusal, either, but rather, a simple but perhaps subconscious understanding he had of himself that this was not for him, not yet, perhaps never. Something like that. I could tell that he knew how to say hi to people, or play with toys. What he did not know was why those were good, desirable things. In some ways, my sister was right when she said so long ago, “So? Why does he have to play with stupid toys anyway?”

I used to plead with his teachers, “Tell me how to get him to like being with other kids, not merely to tolerate being with other kids!” (“Tolerating” something is a big goal in the ABA community. The belief is you get enough tolerance stored up within and you eventually generalize to liking that thing, to choosing that thing. I have found this to be so. But what a drag.)

I despaired over his autism, because I thought that it was getting in the way of his happiness. But it was really getting in the way of mine. But for him, maybe it was just that he was not ready for those kinds of interactions, and did not make them a priority until he was. Now he loves to be with other kids, other people. And still, he doesn’t like talking to them, which is basically all I do with other people I like. So I’ve learned: Nat has his way, I have mine.

What Nat knows and doesn’t know is a bit of a mystery to me. What human is not a mystery to another? We think we know what someone is thinking, we take pleasure in predicting another’s actions, or perverse pleasure in recounting another’s allegedly evil agendas. But how often are we right?

Today we went on a bike ride together and I could see that Nat was very much aware of his surroundings and what to do most of the time, like brake when he got to a stop sign or close to other people. I was breathlessly proud of him, watching him take hills effortlessly without shifting (doesn’t know how, doesn’t need to know how, with those muscular legs), and to see the smile on his face, so like mine. But when we got to a high curb, he clearly did not know how to get his bike down to the street. I had to teach him. I would have thought this was a natural motion to people — the bike lift and lower — but not for Nat. So I showed him. And now he knows. Big deal.

Perhaps it stands out to people, this sort of apparently-obvious thing that is not so obvious to guys like Nat. But the fact is, I have to teach obvious things to Ned, Max, and Ben, too. I have to prompt Ben to answer people who ask him questions. I sometimes whisper, hiss-like, to Ned, “Be nice!” And with Max, I still have to let him know when he has taken someone for granted. And I am constantly learning that I truly do not know the “real” reason someone does something I don’t like. Most of the time it has nothing to do with me at all, it turns out!!

So why should Nat’s be considered a deficit or get a pejorative label? Maybe we can just realize that we can teach people things but sometimes we have to wait until they are ready to learn. And the learning never stops. For him and for me.

I’m especially mad at stupid jump ropes.
— Lucy Van Pelt

This post is dedicated to stupid power failures, stupid house alarms, stupid people who don’t even realize it is their house alarm, stupid Ambien that no longer works, stupid snoring, and of course, stupid mind that thinks of all the bad things and can’t go back to sleep.

The Bad Sleep Song

Blah, blah bad sleep
Have you any guilt?
Yes Sue, yes Sue
Three boys’ full:

One for my Natster
One for my Beast
And one for my Little Maxie, now 6’2″ at least

Blah, blah bad sleep
Have you any guilt?
yes Sue yes Sue
Three boys’ full.

*YAWN*

I am not a refrigerator.
But when you were born
There was something so fragile,
so tenuous
wispy
I was terrified.
I couldn’t even leave the house.
Somehow, I thought you would die.
I was afraid to get too close
deep down
So afraid of losing you,
just a little ball with a face painted on
you could just roll away
A terrible sadness gripped my mind
Maybe it burst through my own tangled synapses
Maybe it rose from the hormones that nurtured you
Or maybe I knew something.

I thought you were going to leave me somehow
There was this impermanence
In the light, then out.
Shimmering, like the string you liked to look at.

I got over it
I guess.
But —
Now.
You are going to leave
I am dodging you
bouncing off you with my smiles
Keeping myself safe
and cool
But I’m really not a refrigerator.