Susan Senator

The first time ever I saw your face I thought the sun rose in your eyes. –Roberta Flack

It’s Nat’s birthday. He’s practically dancing around the livingroom floor, giggles in his voice, right arm punctuating his words. I’m warm and comfy, on my favorite couch, covered in the lilac afghan. About to get coffee #2. Trying to wash the Nyquil taste out of my mouth with coffee. Watching “Beach Party At Disney World,” with Nat. He is especially taken with the Beach Boys’ number “Surfin’ Safari.” When it started, he stopped his JHS and covered his eyes, smiling. He looks like a cucumber, wearing green sweats and a green shirt. It is just so lovely sitting here with him on his 19th birthday.

I’m of course remembering that morning. It was the third day of false labor, and no sleep. I called Mom to complain, and she said, “Call your doctor.” She couldn’t stand to wait for this baby any more than I could! I called Dr. Lichter, no longer my doctor, and he said, “Okay, let’s have a baby.” I was so relieved, and in my nube Mom mind, I was going to have my new baby imminently! Of course, it wasn’t for 12 more hours before I would get to see that shana punum, the “ball with a face painted on it,” as Ned called him.

Newborn Nat was like a plucked chicken, but we could all tell that his face was perfection, and it looked like he had red hair.

We have a moonbounce due to arrive sometime this morning, and (I think) my parents are coming. We moved the party to tomorrow because today is supposed to be mostly rainy, but it looks pretty good right now. In preparation for Nat’s birthday today, Ben, Nat and I baked the cake. That’s just for today; if we still have the actual party tomorrow (Sunday), then we have to bake another cake for that, for when all his friends are here. We decided on Parks and Rec van cake; that’s the navy blue bus that his Social Group takes on their trips. Mallomar wheels and Lego Social Group members. Hershey bars for the road. So it’s going to be two cake boxes’ worth of cake: one to go into two loaf pans for the van, and one flat cake for the road. It’s probably way too much cake.

For presents I’ve bought: 2 VHS Disney videos (Nat prefers old media): Fox and the Hound, and the one where Billy Joel sings, I can’t remember it right now, with the dogs; a huge pepper grinder (he loves grinding pepper); and a huge Reeses peanut butter cup-shaped pillow! Max and Ben are burning him a CD of songs they like, and we’ll also have pancakes and bacon for breakfast.

On my boys’ birthdays I always like to think about how they began, what each of their labor and deliveries were like. I love thinking about the Before and After of My Boys, remembering what life was like before they came into my life, and then the first moment I saw their faces. Nat’s beginning was special in so many ways, and the very first one we were aware of was our transformation from couple to family. Happy Birthday, Sweet Guy! Here’s to you!

(taken when Nat was 2 mos. old, at Laura and John’s wedding!)

I still do not know what to do about my missing Nat so much. This feeling makes me want to bring him home, take him out of there, even though they seem to love him and care for him well. It has nothing to do with them. It is about me, and this unresolved pain. I can’t stand it. It still flares up, every single day. Planning his birthday is especially hard. Thinking about Chanukah, and what to do for the eight days. Wanting him home, then seeing him just lie around on the couch when he’s here.

Sometimes I do not know where I end and Nat begins. I cried to Ned last night, lying on his shoulder, the best bed on earth. “I want him back, I was wrong to send him away,” I said. “Can’t I have him back? We promised each other that if one of us was unsure…”
Ned waited a moment, as he does, measuring his words carefully. “We can,” he said at last, “but I don’t think we should. He’s doing really well there.” Then: “Does he seem sad to you?”

This made me cry some more. My nose was flooding, disgusting. I think Max and Hannah could hear me down the hall. “No,” I said. But it did not make a difference. I just kept crying. “I shouldn’t have done it,” I said. “Why does it have to be this way?” It. It was this way, meaning, there is no good solution. It means that there were times when Nat really scared me, and his brothers. There was a time, a year ago, when he could not be calmed, he was anxious all the time, and he would fly into rages, running out of the house, pinching us, scratching. As if he were telling us he could not stand to be here, either, with our unpredictability, our inability to understand him, our noises, our lights, the stupid weather, sudden changes of plans. What could I do? I could not handle it. I can only do schedule boards and penny rewards and calendars and stay organized for so long. I’m naturally sloppy, changeable. I could not help him. Why did it have to be that way?

And then even when things improved in Nat’s attitude, there was the Sword of Damocles, the post-22, the end of childhood to consider, ready to drop upon us. There was the matter of the state’s cruel radar screen. The bureaucracy that determines who gets funding as an adult and who does not. The legend that goes around, that if your kid is in residential, he is more likely to get housing and supports as an adult.

It’s good for him, it’s good for him. Meanwhile I hear from others I know, adult autistics, about how they hated residential, how they hate Risperadal, ABA, all of these approaches we take in the name of helping our children. And I get so scared that once again I am on the wrong path. I had this child whom I love more than my own life, yes, that is true, I have to say that. And I feel sometimes like I have failed him because there are no real answers, there is no one I trust except Ned, and he’s telling me to hold on. So together maybe we’ll duck the Sword and the five of us will get out of this alive. I hope.

As a parent, I am not much into force. But sometimes I am able to push just a little bit if I believe there will be some real growth involved. I actually do not do this nearly as much as Ned does, and not nearly as much as I ought to because I tend to get weak in the moment. I forget suddenly what all my good reasoning had told me, and I just do the other thing. In that moment of lapse, it is as if I never even knew about all the other information that I had, or the experiences that have built up my stores of knowledge. I just see the sparkle of something bright and I lose my head.

I have always tried to honor my sons’ rights to their own, unique lives, but I have often made a mess of it. In trying to do “the best” for Nat, I would think and think and think and observe and read, and then I would go ahead and choose the inferior school program, because I was lured by the Fool’s Gold of the High Functioning Classroom, and the pressure would inevitably cause Nat either to tune out or act out.

Being weak in the moment is something I have dealt with my entire life. When I was eleven I started my first diet (yes! terrible. another blog post altogether) and I experienced the pain of hard work and days and days of struggle not to eat certain things, and then in one soft hole in time, I stepped right through and landed on my fat ass.

There were so many other episodes of my impulsive giving-ins, and not all of them are self-defeating. Many times I have found that my sudden change of heart/mind(?) led to something fruitful. (I had Nyquil last night so I am struggling to hold onto my point here. But there it goes because Oh my God I just looked up and the sky is on fire! Bright pinkish-orange shoots up behind the leafless black trees, framed by my window like this painting I saw at MOMA when I was little.) More coffee, hold on…

The weak moment can also be characterized as a sudden forgetfulness, an abrupt change of heart. Sometimes forgetting all that I resolved has actually led to new discoveries, wondrous epiphanies. I think the most striking event of this nature was that day that I was sitting on the couch with Nat, he was thirteen and doing that horrible loud laughing, as he had been for months. His school staff had told us to “redirect” him when he got that way, to use a box of cards that needed to be alphabetized, to hand him the box without a word (so as not to reinforce undesirable behavior) and cause the boring, absorbing task to draw out all the juicy laughter, forcing him to be appropriate.

(Is there any word more shaming, boring, mouth-pursing, fun-sucking, than “appropriate?”)

But I was so tired that afternoon. I hated the alphabet cards. I hated the obnoxious laughter. I hated the fact that my kid did not even laugh right. I slipped into vague despairing impotence, and impulse took over. I just turned to look at him, really look at him. So cute! I smiled tiredly. I poked him, and tickled him, as if to say, “You want to laugh? I’ll give you something to laugh about!”

He looked at me, laughing and laughing and dodging my fingers, but also loving it. I looked at him, and now I was laughing, too. That was when I had my first real connection with Nat. Weak moments can be strong stuff.

There have certainly been ways in which my other two sons’ will has been subjected to a Higher
Authority, namely mine and Ned’s. I try not to force Max and Ben to interact with Nat in any way that did not feel natural to them, but sometimes I wish I had, because their relationship with him seems so sparse; just the bones of politeness and respect, but certainly no evidence of fleshy brotherly love.

Last night when Nat called, or just before the time when I knew he would call, I asked Max if he would speak to him. Max turned red and shook his head. “Why not?” I persisted. I usually drop it then and there, because I don’t want to intrude on their relationship, and I want to respect Max’s right to come to terms with Nat in his own way. But — why? Why the F couldn’t he speak to his brother just once?! And the weak moment opened up.

The phone rang and I talked to Nat. He was very clear, also listening and answering questions well, and also asking a question or two: “How are you what you do today?” So after I was finished, I handed the phone to Max. And I watched him have his first phone conversation ever with his older brother.

I experienced so many feelings at once that I almost couldn’t watch. The conversation lasted less than a minute. “How was it?” I asked Max.

More red face. “I don’t really like talking on the phone to Nat?”
“You don’t? What?” I said.
“I don’t like talking on the phone to anyone,” he explained.
“Okay, but how was it?”
“Okay.”
“Did he ask you anything?”
“No, but he did answer my questions pretty well,” he said, sounding just a little impressed, for a nanosecond.

And the awkward moment passed. Had I done right? I think so.

I posted a question yesterday on one of my autism email groups (which consists of autistics and non-autistics, some of whom are also autism parents). I was wondering, as I often do, about how we figure out who are children are and what they are feeling. How much is projection, and how much is observation/reality? This question applies to any of one’s children. But I was especially thinking about Nat, and how I have come to think of him: as my Innocent, my Good Egg/Hard Worker, and my most Spiritual Child.

It was fascinating and illuminating hearing back from some list members. What I heard was that although it is harmful to cast your child in a negative projection/concept, e.g., a “Devil Child,” my “Bad Seed,” “Brat,” etc., it is just as harmful to cast your child in a simply positive projection, especially if you believe that your child is only this one thing, for example: “Angel,” or “God’s Child,” things like that. That you do your child a disservice by seeing him in just this one way, positive or negative, because you deny his human complexity. Any person may be all of those things and more, at some time or another. It is impossible to fully know another human being.

I agree with this, because I know how horrible it is to be summed up and then often dismissed. I hate when people think they know me, just based on a few signs. But just as horribly, I am guilty of it all the time. I do that with all of my children — maybe with all of my loved ones. It is wrong; but it sure makes life easier. I think of Ned in particular ways, whether he agrees or not. And Max and Ben, of course. I think of one of my best friends as “Stable,” and God bless her for that, at least one of us is. And the thing is, I don’t think of Natty as being able to communicate with the angels or anything like that (I don’t even believe in angels!). It’s just that he always jumps up to go to synagogue, when the other two of my boys sulk about it. And he knows all the prayers, and happily endured a bar mitzvah. So he is my Spiritual one, simply because he is moreso than Max and Ben. But he is not just that.

I guess that the danger with getting to know an autistic human being is that the signs I go by typically with others for information, are not necessarily there with Nat. He does not necessarily smile even if he is happy. He talks to himself when he is happy but when he talks to us he becomes anxious. There is clearly a lot going on inside him, and that is the part that is both wonderful and tragic: that he is every bit a multifaceted young man as Max; but it is so much harder for me to discern his unique parts.

I believe that we are all human and so even if the signs Nat sends out are sometimes not what they appear to be, I think that I can interpret what I see through my own filter, because that’s all I’ve got for now. I think it is better to try and interpret and even be wrong, than not to try at all. Trying to connect is better than not, in my opinion, though I’m sure there are those who do not see the value in connecting. And of course you always have to keep in mind your large margin of error, and continue to try to understand what he means when he does or says something, rather than what you think he means.

Does this make sense? Your thoughts?

This is a day off so I have time on my hands. That can be an ugly thing for me, but it can also be fantastic. I am soon going to rake leaves in the sunshine with Max and Ben, and that will be lovely, plus it counts as an exercise (according to my number one exercise resource, Dad). The only thing that would be better than that would be to have Nat here for the raking. He is a total leaf workhorse. He rakes and rakes and he bags and bags. He doesn’t need to stop to jump into a pile. I know I’m idealizing it; there were so many times when he would just stand there moving the rake up and down and not accomplishing anything. Other times he would have screamies or tantrums but when we told him he could just go inside, he’d scream more. Well, he is just not like that these days, and I know he’d enjoy it and be helpful.

Even though it is lovely out, I cannot run or bike or gymnify because I am still giving my knee-hip-heel-lower back a rest (all on the right side, mind you! What would an aura reader think about that, or an orthopedist? This Enquiring mind does not want to know.) so I will probably dance tonight; plus it’s been over a week since I even did that! Ick.

Here is what I want. A vintage 1970’s Fifi Abdou style costume. It even has tiny puffed gauzy sleeves and an ostrich feather cape! Can you think of anything more wonderful or inspiring for dancing? You would feel like Disney’s Cinderella in it — her dress was kind of blue, I think. I have not bought a new cossie in months and months and months. I have been trying to make cuts somewhere, but unfortunately I just bought some amazing new boots at JCrew (half price, made in Italy!!!) so what’s a girl to do?

Nat keeps sounding tiny and spacey on the phone when he calls from the House. The staff told me that the only decent phone is in the livingroom, where there is a lot of noise. I keep forgetting to go and look at the phone setup when I’m there. When I bring this up to Ned, he talks about buying the House a really great phone, one which could be moved to a quiet room. That would be a solution to the specific problem of being able to hear Nat better, and get him into a quiet space. But to me there is a bigger problem: the way that I feel when I hear Nat’s little, spaced-out voice, which then makes me wonder how he is feeling.

Maybe I’m projecting, you might be thinking: You are layering onto these conversations your own feelings of missing him and self-doubt. You would be partly right; how could I help but project? A friend told me recently that I always have at least one other conversation going on in my head, in addition to the “real” one in front of me. I had never thought of it in just that way before, but it is true: I will be talking to someone and hearing their words, processing and responding to them, but inside I will be imagining all kinds of other words, things I could say back but I am censoring, that might feel rude to ask, that might sound flippant, disrespectful, and all kinds of mean and nasty. Irrelevant stuff, inaccurate stuff. I have learned over time to sort out what can be said and what should be thought, but I still do not get it right very often, as you can see by what I write on my blog. People ask me, “How can you put stuff like that out there?” And I feel a little proud but also a little hurt by it, because there is this implication that I’m maybe freakish somehow by being so — “brave,” they say — but what do they really think? (There I go again with my alternate conversation.)

Nevertheless, I wonder. People say, “Your heart will tell you what the right thing is.” I always feel frustrated by that one, as well. I listen to my heart, but with my ears which are connected to my brain. My brain interprets my heart; my heart can’t do anything but send out feelings (and blood and all kinds of warm and lovely). How exactly to you “listen to your heart?” That’s fucked. I think that to listen to your heart, you have to look at all the evidence in front of you — all of it — and you also have to figure out why you always feel a certain way when confronted with this issue. You have to pay attention to both conversations going on, in other words.

So while all around me there is evidence of Nat thriving in the House: ability to converse mostly on his own (sometimes) on the phone, no outbursts, utter willingness to work, play, attend school, learn, and care for himself, there are also the things I see and feel here and there that are the other conversation in my head/heart. I mean things like the spaciness of his conversation at times, the spaciness I see when he’s at home, the je ne sais quoi I still need to hear about his day. The staff does everything right in reporting to me: school day, goals accomplished, demeanor at different times, etc.

But then there is the feeling I have that I am not getting what I need here. There is something I am still not knowing, and then that ends up meaning that I don’t know what Nat is feeling about the whole thing. That, of course, is the puzzle piece I deal with these days. Not the “mystery of autism,” or the “need to solve the puzzle,” but the question of “how does Nat feel about being in the Residences?”

What if the “evidence” everyone presents is just others’ interpretations, others’ attempts to draw a conclusion of success, and yet is not accurate in terms of how Nat is feeling?

And the real question is: how do Ned and I weigh the benefits of Nat’s living outside our home (for there are many) with all of the unresolved, unknown doubts and feelings?

How do you resolve these kinds of Big Questions? How do you give credence to/dismiss the other conversation in your head?

It is way past Halloween, and this post may seem as stale as your kid’s bag of leftover Mike-and-Ike’s and Milk Duds. Nevertheless, I have consulted on the matter of candy with all three of my sons, who are Sugar Addicts, marking their favorites so that I know how to properly reward and indulge, and I have taken stock of my own corn syrup proclivities. All of this is to completely rebut this particular blog, where one blogger claims to have accurately found the ultimate Candy Hierarchy.

He lists at the very top, the top, mind you: Caramel-based candy. Okay, that is just wrong. Caramellos? Please. Right up there with the aptly-named Milk Duds.

He puts chocolate-based candies second. Second! Most women of the world would disagree right there. Come now, we all know that chocolate is a magical elixir and caramel–? Well, the best you can say about caramel is that it has the magical quality of sealing your teeth together, a la Dr. DeSoto.

1) Chocolate-based with a highly intense added ingredient (as opposed to pure chocolate. Chocolate-based has the necessary added oomph that takes a wonderful but monolithic taste and juices it up with that extra twist. Chocolate is like the beautiful ballgown, but Chocolate-based is the ballgown + tiara.) For example: Cadbury Chocolate Creme Egg; Reeses peanut butter cups; Milky-Way; Mounds; Almond Joy; Snickers. I don’t count Three Musketeers because the nougat by itself is too bland (Ben disagrees) I don’t count Baby Ruth because peanuts alone are too salty and therefore almost spoil the chocolate (Mom disagrees).

And now I have to add an exception to my own rule: M&Ms; must go in the top-tier and I submit that the colored coating on the outside is indeed that extra bit that sends the little chocolate pill of delight into a narcotic-like perfection. My proof is that my sister used to eat only the candy shell (by sucking the outside of the M&M;) and then she would give the soft inner chocolate to me, which although it sounds disgusting, was actually quite delicious, having been warmed and perfectly softened by her loving sisterly saliva). Charleston Chew is in this category because the nougat is vanilla flavored, thereby helping propel it to the hallucinatorily delicious levels.

2) Second tier: The Chocolate-based with only one, non-performing or counterproductive additive (see above). Also includes the disappointingly cracker-like dry KitKat of Office fame; Twix (see KitKat); Milk Duds; 10,000 Dollar bar (still in production?); Rollos; Whoppers (interesting but chalky); Tootsie Pop.

3) Third tier: Plain Caramel. Caramellos; those plastic-wrapped cubes you get in places like Williams-Sonoma or Starbucks. But at least they are still sweet and chocolate-like.

4) Fourth tier: Fruit-flavored. Skittles; Starburst; Warheads; Now-and-Laters; Jolly Rancher; Lollypops. Fourth tier are candies you will eat only when all the other categories are gone. They are not terrible, they are just plain weird.

5) Fifth tier, not even a candy: Nuts; raisins (“Nature’s Candy” Ha! Only if you are a regular patron of Wholier-Than-Thou Foods) ; candy apples; Sweet-Tarts (almost like flavored aspirin); Smarties; Pixie Stix; Wax Lips (sorry Laura, but it’s a candle without a wick); flavored medicines (just kidding, do not try that at home).

I don’t know where to put Tootsie Rolls or Rock Candy, but I love them; they are almost in the First Tier but they break my rule.

6) And finally, the bottom Circle of Candy, really a Candy Hell: Diet candies, Weight-Watchers, and those which are low-carb because they are made with sugar alcohols. They taste very much like real candies, but if you have more than say two fun size, you will have nausea, diarrhea, and other nasties.

The boyz have been playing Little Big Planet, which is the cutest and most fun PS3 game on earth! The character are sack puppets, kind of like brown hackysacks with arms and legs. They move like stuffed dolls but also are animated like cartoons. Adorable. We all just laugh and laugh as we send our characters on rocket rides, have them dodge waterwheels and flames and spikey bridges. They get whipped around and battered by the winds of fate and yet they hold on somehow with their little fabric hands. Mine kept dying yesterday and eventually I put down the controller before anyone else got hurt… I think Ben was relieved. I was, too. My continued epic fails were starting to give me that feeling I used to get when Laura was beating me at a game. (When that feeling set in, I would eventually just toss the board and say, “I QUIT!” Eventually Dad said I couldn’t do that, but…)

I tried to get Nat to join in the fun, but its appeal eluded him. Yet I was relaxed and okay with that because he was just so full of life yesterday, from the moment he stepped off the van. I just grabbed him and — kiss, kiss, kiss, kiss — my boyz just endure it.

It’s hard to remain sad and doubtful about Nat’s happiness when he comes home and it’s just Joyful House Stompies the whole time. And then when we dropped him off at Social Group (the gang was going up to Kowloon for some Chinese food, which is one of Nat’s favorites — chicken lo mein and tangerine beef ) he burst out of the car and was doing Joyful Parking Lot Stompies, over and over again. One thing that did hurt a little was watching him for a moment, when he slowed down and was just standing alone, apart, while all the others in Social Group hugged each other and chatted. (Does that matter to Nat? He was kind of still and quiet. What could I do? Nothing, nothing, nothing. You can’t hug it away anymore. You can’t talk to him, you’re the Mom. You just have to sit in your car and ache. Okay, at least it didn’t last long. ) Nat just jumps into the van with that grin on his face, and they speed away, a bus full of happy, adorable, eccentric characters, going wherever the Social Group machine takes them. Kind of like their own Little Big Planet.

Take a look at Our Planet:

It is the beginning
of your time
the end of fall
the start of your life
Your adulthood
Your childhood
mass together in the leaf pile on our lawn.
The death of the light
The Dementor weather, clammy and sucking

Are you feeling all of this
Has it sunk in yet that you are there
Not here
Do you understand “forever?”
It’s not forever
But I don’t know if you know
I still don’t know what you know
I only know that I wish
I wish I wish

I have a little boy.
What luck! Such a good idea, to wait 6 years.
I, surrounded by mountainous men.
still get
The slightly chubby hand
Dimples instead of knuckles
Regular use of bandaids
Farty noises
I still can
Make him happy with a surprise cookie
Kiss his head that smells like pencils
Tuck him in
But not in front of anyone
Only when he loses the prickly boy shell
And starts to soften with sleep.
Breath still sweet
Adorable small feet
About to burst into a pubescent terror
Pizza face, girl ambivalence
But until then
He’s just my Ben.

Nat’s birthday is Saturday, November 15. He will be 19. Dig it, 19. Okay, I am not going to get all emo on you right now; I have a head ache, a stomach ache, a hip ache, so I do not feel like talking about heart ache.

I am happy to have finally gotten my act together to formulate a plan for my darling. I have rented this for The Big Day. Nat and his friends love to bounce. So do many of their parents.

Of course the (edible) cake will also be fantastic. Stay tuned…

Family of five, family of five
That’s what gives me all my drive
I hate to cook
Rather write my book
But I’m happy to be alive.

I am in such a good mood. Probably because — well, I don’t want to jinx it so I won’t say it. But things look good.

But also I’m happy because of my family. And mostly because I had a good idea for dinner and everyone ate it! Ah, the power of meat. Max’s girlfriend, who is here pretty regularly, is a vegetarian, so I make her dinner in a separate pan with just the veggies. And I, who am once again on my much beloved-hated Atkins-Fatkins, have to have a separate pot for my low-carb pasta. It is, as my mother would say, a house full of kvetches.

But who cares? I am so used to it by now, veteran balabusta that I am. I can cook for four, five, and twelve. It’s the clean-up I hate. Anyway, it is a joy having Hannah here, too, not only because of her delightful sprite-like self, but also because she makes five at my table and five is what I am used to: Ned, Sue, Nat, Max, Ben.

Oh. There, my spirit plummets suddenly because I am thinking of Natty. On the phone tonight his voice was tiny. He repeated my questions without answering. Very little content. Finally I just felt that maybe what he needed was just to hang on the phone and listen to me talk. Maybe he just wanted to hear my voice. So, that is easy. I just talked and talked, and told him about all the upcoming Social Group events as well as the food I was going to make him when he was here. “Yes,” he said when I told him about the meat sauce and noodles that await him.

Truthfully the way to a man’s heart is through his stomach — and his arteries.

ABCNews.Com has launched a new website, OnCall+ Autism, full of resources and featuring several people/families’ stories. One such family should be pretty well known to you by now: The Batchelder/Senator family. You can click here and see all the stories. Ours starts out a little melancholy or wistful, which is not how I feel in general, but it is honestly recorded nevertheless. At any rate, the piece picks up and ends on a hopeful note. The reporter, Lara Salahi, was empathic and thorough. She visited us, got to know Nat, saw him at his Special Olympics swim practice, and pretty much wanted to be absolutely certain that she truly understood the spectrum of The Spectrum.

At four in the morning, I woke up thinking about Nat. I had dropped him off yesterday at around 1, and it just did not feel good. Not the House: everything was the same; people happy to see him and he seemed happy enough to be there.

No, still, the problem is me. Well, that’s pretty simplistic and apparently self-hating. And I really do not hate myself; I just expect a lot out of me. I have a standard, written indelibly into my brain that guides me, for better or worse. Or maybe it resides in my heart, because it is kind of rigid and unseeing. I don’t know, I’ll try to figure it out before the end of this post.

I was remembering how it was when my cousin C died, and how her son — to whom I am pretty close — told me that because of the difficult, strained, and painful relationship they had had most of his life, it kind of made her death all the more devastating. I think he meant the unfulfilled potential, the untasted joy. The Could Have.

And then there was the time when Ned, Max, and I were watching baby videos of Benj. Oh my God, Baby Benji was just insanely cute. There was this fat, innocent, bouncing baby, wearing tiny Gap clothes and Ben’s face. You could see Ben in him somehow, but — Jeez I’m getting flooded with Mommy hormones just thinking about it. (Like the other day at the gym, I’m just sitting there, or really standing there, doing the Stairmaster at full blast, barely able to speak, when this young mom walks by with her toddler boy, and he is wearing a bumblebee costume. He had a square-round head tightly fitted into his Bee hood. Big blue eyes, huge unknowing baby smile. The mom scoops him up right in front of me, like a little beach ball, and he — cruel cruel creature — rests his head against her shoulder and looks up coyly. Max. Max, Max, Max Max… I just pushed my legs up and down, my heart bursting, remembering him — and he was even cuter than that baby! I mean breathtakingly, head-turning cute. Yes, you know what I mean. Just like yours. And I filled up with that baby juice, that I thought I had allowed to evaporate with my new mature Working Woman of the World self. But there it was.)

So when Max was watching that Baby Ben video, and he said longingly, “Oh! I should have hugged him more!” I knew exactly how he felt: Should Have.

And I, if I could have it to do all over again with Nat, I just would have enjoyed him more.

I awoke with a cand-over. This is worse than a hangover: it is, of course, a backformation invented this morning to describe a candy hangover (nausea, sore neck, headache, disgust for sugared food). This makes me want to write about Ben, who went out trick-or-treating with a band of ten boys, and a few weakly-costumed moms.

Ben is the most creative person I have ever met. It is typical for us to find piles of paper with creatures drawn on them and elaborately-fonted text explaining all about them. He invents whole cultures, languages, and even planets populated with his people. He makes them into Lego people. He talks about them as if they exist.

Recently in our home little slips of paper — the post-its I bought for work — have been turning up here and there with tiny creatures drawn on them. Ben’s work, of course. The post-its then appeared on a sheet of paper, stacked up one on top of the other. Ben explained it to me: something that began as an assignment, as part of an intro to economics (yes, in fifth grade!), the kids were to come up with items they would like to sell if they were to own shops. Ben teamed up with M and thus the Uglis were born.

Ben was quite willing to hang out with The Ten. He didn’t even know some of them. He is not really friends with most of them. But most were in his class, and lived around here.

This is not like the Ben of old, my little darling who was shy of large groups his whole life. Last night Ben just donned his “Keton” mask and costume and temporarily dyed blue hair, and became Kafei, and joined up with the ninjas and the grim reapers, collecting tiny candybars and running from house to house. He has become, in fifth grade, a looser, bouncier, happier version of himself, and he seems to be unfolding by the week.

I think one reason is the Uglis, the guys on the little post-its. The Uglis are Pokemon-like beings that Ben and M — and then also Ben’s best friend I — designed for their store. The Uglis “evolve” the way Pokemon do: one starts out kind of innocent, with fairly benign powers, and eventually morphs into its most powerful form. The Pokemon, as many of you know, have clever names. Squirtle, for instance, is a turtle-like Pokemon who evolves into War Tortle. (Squirtle was also the name of Ned’s beloved ’94 Civic, may he rest in peace. Ned actually donated Squirtle to one of our favorite charities, WBUR, which is the Boston branch of NPR, so you could say that Squirtle is not dead at all, but rather, has morphed into a new evolution, perhaps something like “Yertl,” for the famous hubris-filled turtle of Seussian fame.) In Ugli world, there is, for example, “Serafight,” an angel-like being who fights. Serafight evolves into Cheruboom, an angel-like thing with a cannon. And so on.

[break for coffee]

Ahhh, where was I? The Uglis. Well, Ben’s little shop of Uglis became a real-world meme of sorts throughout the fifth grade. Everyone started designing and trading their Uglis, with Ben pretty much in charge. Even girls were making Uglis.

Yesterday in the car Ben said to me, “You know how you get a whole bunch of people to play with you? You start a game where you draw creatures that you have to buy and sell to each other.”

“Oh, like the Uglis?” I asked, astute Mommy that I am.

“Yeah,” he said.

Maybe I should start drawing Uglis. I wonder if you can make them Pretties?

Sorry, sometimes politics must trump all, especially when our kids’ needs are at stake. I don’t usually do this, but it is my blog, after all! I urge you all to vote for Barack Obama for President. If for nothing else, think of what he intends to do for the disabled. This came my way and I was just so excited to see it that I have to post it! All emphasized bits were done by me, including the “yay”s.

As President, Barack will begin by creating a new White House post:
Assistant to the President for Disability Policy. He will press
Congress to pass the CLASS Act and the Community Choice Act to help
Americans with disabilities to choose to live independently in the
community and to help them pay for the direct care workers, assistive
technology and other tools that make independent, community-based living
possible. (YAY!!!!) For our children, Barack will continue his fight for full
funding of IDEA so that students with disabilities are assured of a free
appropriate public education. Barack agrees that funding IDEA at less
than half its authorized level is a disgrace, but he also understands
that merely wringing more money out of Congress is not enough. His
Secretary of Education will fully implement and enforce IDEA. Local
school districts’ foot-dragging and resistance to IDEA, denying teachers
what they need to serve kids with disabilities in the most inclusive
possible setting, will no longer be tolerated. (YAY!!!)

It’s easy for me to say that my friend Barack will do these things, but
this isn’t just friendship talking. I know he will do the right thing,
for two reasons. First, there is his record: As an Illinois state
senator Barack Obama sponsored legislation that created an autism
spectrum diagnosis program, designed to implement evidence-based best
practices. Barack worked with Illinois families to build the Easter
Seals academic programs that prepare students for independent living.
Moreover, Barack helped pass Illinois’ mental health parity law as a
State Senator. Barack understands that we need universal screening,
education and early intervention strategies for all children, but
especially children with disabilities. That’s why he intends to provide
$10 billion per year in funding for developmental programs serving
children between birth and age five. Barack has long supported the
Family and Medical Leave Act; as President, he will expand it and help
the states create paid leave systems to ease the tough choices that are
faced every day by working families providing support to a disabled
member.

That sounds like a good use of tax dollars to me. Where else might the money come from? Oh yeah, I hear Obama will end the war, which apparently costs us billions per month… so maybe we actually would not even need much of a tax increase!

1) Mad Men
2) Fun Size Milky Ways
3) Nourhan Sharif bellydancewear
4) Opi mauve
5) My English class
6) Raqsat Vashti
7) Ned’s Civic Hybrid
8) French onion soup
9) A great eval from my supervisor
10) The I.T. Crowd

Why does all the support slow down and become suck city when a special needs person reaches 22? What’s magical about 22? Why not 32? Why not for as long as he is alive?

Oh, Welfare State, some of you are no doubt thinking. Crazy-liberal-Social Contract-Big Government types! Spend, spend, spend!

Yes, spend. Spend on social programs. Create supports so that people can get the help they need to live decent lives, so that they can fulfill their potential. We can only benefit from such a plan. And you know what else? Our government is big whether you know it or not. It just depends on what you want to be big. You may want a very large military operation. You may want highways maintained with government funds.

You may want every single person in the country to have an education, regardless of ability to pay. You may want to see every single person working, playing, and living as fruitfully and as healthily as they can, above all else.

I want that for Nat. The education that Nat is getting right now should extend into his adult life. I want to see the progress he has made continue. I want Nat to be able to work, because he clearly gets joy from being gainfully employed. I want him to continue to learn how to converse, and how to take care of himself by learning social skills, cooking, cleaning, medical self-care, community safety skills.

I have seen what the years and years of publicly-funded schooling has done for Nat. He has gone from being a child with almost no words, no play skills, no desire to interact with others, no ability to follow directions or to get what he needed, to someone who has all of that, and more. The more he is taught, the more he learns. He will not need to have constant care and attention in an institution, the way people did decades ago. He will not feel the need to explode with frustration because he has been taught how to express himself to others. He will form relationships and contribute to the general happiness around him.

These accomplishments have value, from financial to emotional to social to communal. Yes, it cost a lot to bring Nat to this point. But I think it was worth every cent. He took every bit of energy teachers devoted towards him and he pushed himself to learn, to compensate for his differences. And in turn, he has taught those around him a lot about different perception, about God, empathy, and unconditional love. Nat has returned society’s gifts in equal or better tender.

So, I’m sure, will all of your kids, if given the opportunity.

I want them all to have an IEP for life. I want it for them, and for Nat. I want to see what else Nat can do. I want him to experience the world unfolding, the wonder of understanding, the beauty of other minds, the joy of connecting and achieving. If he has staff around him as an adult the way he does as a teen — people who patiently and gently provide structure, modeling, prompting, praise, and repetition as needed — I can only imagine the strides he could make.

Isn’t that every bit as important as building a better highway system?

Over the weekend we went whole-hog Halloween. We did the house decorations, we carved punkins, Nat and I made fudge, later he went to a Halloween party at the high school, Ben and Ned finished Ben’s costume, and after Nat went back to his House to go to yet another Halloween activity (Halloween Town), we four + Hannah attended Pumpkinfest, the autumn fundraiser at Ben’s school.

Crossroads
Seem to come and go…
— Allmans

As I write this, I feel vomity guilt rise in my throat, but it is true: I go through my days mostly not thinking about Nat, except stray moments. I walk past his door and notice how he makes his bed now that he’s been living at the House. I see his empty chair at the head of the table, where we put him back when Ben could not stand to face him, so bad was the hate, anger, grief, whatever stew of emotions he felt.

When I suddenly do think of him, my heart lurches. How did I not think of him, that moment before? How can I have dropped the thread?

I always felt bad about the seat-change in our dining room. I know how Ben felt. I don’t know how Nat felt. Did Nat pick up on Ben’s hostility? I think Ben made him skittish, at very least. I never knew what to say to ease the pain between them. I did a terrible job of it. The flood of happiness and little-boy bounce that Ben exhibits is just golden to me, a light laugh, a blessing from God. My own happiness, my freedom. Max’s freedom to just be the crabby grunting teenager, no guilt. It was all born of Nat leaving, which just rips me open, like Prometheus: always healed the next time I’m with Ben, Max, or teaching my class, or changing plans just like that, or letting lights stay on and handbags stay open. I’m always freshly lacerated when I think of why.

I have the pressure of tears behind my eyes and my brow has been furrowed most of the late afternoon, my lowest time. I think that what happened was I went for a run and as I rounded the two-mile point, “Sweet Melissa” came on, which was the first song on my Labor Tape. I know I’ve said this before. That song, that song. It is the song that reminds me of my early labor, the Braxton-Hicks, the warm-up contractions prior to giving birth to Nat. I wondered if I was having a girl, contrary to all signs. I had seen him in a dream — laughing, with bright blond hair, in my sister’s bedroom in my parents’ home in Connecticut — yet I still thought I was having a girl. We never had the later-term ultrasound, I don’t know why. We had so much confidence in my baby’s health, and mine.

So Sweet Melissa, in late October, is my Nat song and my Nat time of year. His birth day was November 15, 1989.

I ran around that bend and I felt my face clench into misery, even with the bright blue sky and the light rhythmic breathing of a perfect run. The tears I cried mixed with my sweat and I kept clearing them away because I didn’t want people to see, and wonder about the idiot who cried while she ran.

Just like maybe some of you wonder about the idiot who just can’t get over that her firstborn moved out. Mawkish, maudlin me. But I don’t care. I still worry. I still hurt. I still think of things he might be thinking. And I don’t know, I don’t know. This isn’t about evidence, reports from the staff, his teachers, my own eyes. This is in my stupid fat unseeing heart. I don’t know if he’s wondering if he’ll ever live fulltime at home, ever again. If he’s wondering why I gave him so little warning about moving out. I was so selfish, thinking only that I wanted to preserve the peace and not get him all anxious and aggressive again. I am so afraid of the return of the aggression. The absence of the aggression means that so many doors are open to him. He can go anywhere, outside, do anything, with others, and it seems to me that he likes that, the way he smiles when I drop him off at Social Group. Those are his dudes, his peeps.

But I don’t want to think about the aggression. I can’t stop thinking about Nat and how it still hurts, the parts I didn’t get right for him. And just missing all the parts, all of him.