Susan's Blog

Saturday, March 11, 2006

Autism is not Less Than

“Even God had some autistic moments which is why all the planets spin.”
This enchanting thought came to me from a young reader who works as a peer model to autistic children. Her grandfather came to a reading of mine and gave her my book. This insight of hers took my breath away, and made me think more about autism as a way of being, rather than a disorder.

At each of my events, someone asks whether Nat knows that he is “different.” I think that people also wonder if he is unhappy, if he understands his difference enough to make him unhappy. It is still such an alien concept for people to think that autism is not equal to less than. It is endemic to the culture we live in that autism is akin to a disease, a disgusting malady that steals children and turns them into monsters. I have been guilty of those exact thoughts, during the time that I was first coming to terms with Nat’s autism. I think the monster part is because manifestations of autism, particularly of an autistic person who is untrained or misunderstood, can be so difficult for others to live with. Nat’s aggressive behaviors and his destructive tendencies made us feel as if we were living under siege, in a war zone. It is still difficult for me always to remember that Nat’s mind goes extremely quickly to blind rage and old behavior patterns when the triggers occur. But come to think of it, this is true for me, too. The minute a friend, INF, for example, goes AWOL and is out of communication, I go right back to little-girl mode, insecurity, sulking, despair, just like in my childhood. In those moments I truly believe that I have been abandoned. It takes a lot of thinking and diversion to bring myself back to my center. That’s just how I’m wired.

Same goes for Nat, then. He snaps right back into “Must pinch that stupid person” mode.

But recently, at two different events, people in the audience insisted that our autistic kids must really be unhappy because they know they are different. They cited examples of higher functioning autistics who expressed unhappiness at their difference. I was at a loss as to what to say. My instinct was to point out that anyone can feel unhappy if there is something in their environment, whether inside or out, that is not nurturing them. I am not autistic; I would be considered a well-adjusted, high-functioning human by most standards. Yet I have so many moments in a day during which I feel unhappy with myself because I am so different from those around me. Maybe I’m different from Nat in that I have enough language to talk myself through these moments.

But maybe he is better off than me because he does not have the language to understand what others around him may or may not think of him. Maybe all he has is an occasional frisson, a feeling of discomfort, a shimmer of unhappiness that remains unexplained — and then it passes and he’s fine.

If that is the case, then I envy Nat his autism.

Friday, March 10, 2006

Blue Birthday

Yesterday was the bluest I have felt in a very long time. Even though it was Max’s birthday — or maybe because it was. This is interesting to me because I used to feel the bluest on Nat’s birthday, in fact I started my book with the confession that November 15 is the saddest day of the year. Well, it may have been that March 9 was, this time. Just goes to show you, why blame autism for your unhappiness? There’s plenty to be unhappy about in this life!

I guess it’s because Max and I have drifted a little. He is now 14, and still a sweet, caring boy, but a teenager nevertheless and that means he has little overt use for his mother. It also means that I have a tough time finding things in common with him, or even understanding half of what he says. Not only is his voice very low and rumbly, so it is difficult to actually hear him; the stuff he talks about is either computer-related or Myst/Uru-related. I only know how to use computers, not program them, and I can’t keep up with Uru Obsession, the chat-game-hacking he does nightly.

All week, particularly yesterday, I did my usual birthday song-and-dance. Conferring constantly with Ned, I planned two cakes (actual birthday and party); I planned a party (Saturday, 3 boys sleeping over); in addition to Ned and Ben’s gifts Godless, by Pete Hautman, and Matt Groening’s Huge Book of Hell), I bought presents (3 funny XL tee-shirts, a silly tie, $50 I-Tunes card); I decorated the playroom to look like something out of Riven, a sequel to Myst; and Ben and I hid tiny birthday cards all over the house for Max to find.

When Max clomped in at around 3:30, Ben and I were all eager for it all to begin. But just then the phone rang; it was Max’s girlfriend, who is currently living in Norway (yes, Norway! and she calls frequently!) So when Max walked into the decorated playroom, he was — needless to say — distracted. By the time I could explain what it was I had done to the place, it was a bit anticlimactic.

“I like it!” Max said cheerfully, good naturedly. He was humoring me a little, I think. I went upstairs, suddenly overwhelmed with the desire to cry. I couldn’t help but remember his fourth birthday, when I had converted the whole living room into a pirate world, complete with a ship (the coffee table, which has a knot hole in the middle, and I stuck a broom in it to form the mast). Back then I suppose I was a goddess. Now I was just what? Dear Old Mom.

I pulled myself together in time to make the cake with Nat, who loves batter. There was a moment when I thought trouble would erupt because this time I only gave Nat the mixer to lick, and I gave Max the bowl and spoon (Benj doesn’t like batter). Max said, “Really? I get the whole thing?” Another thing that made me want to cry. All along I have been just giving the batter to mostly Nat, who is to share it with anyone else who wants any. But Max, mellow, non-confrontational guy that he is, never insists on his share. Max’s joy at having the bowl to himself stabbed me in the guilt-gut.

Finally Ned came home, and I felt some of my ill-timed misery lift as it does when he walks in, shouting, “Yo!” Comes upstairs, kisses me hard on the lips and takes over. Into the back part of the kitchen we went, squeezed in with Ben and Nat, working on the cake, which was — what else? A scene from Riven, of a golden dome split in half, with kind of a round thing peeping out (so many subtly vaginal images in that game, no wonder it is so popular with teenage boys), and a long phallic bridge leading up to it, and stones with symbols on them. We frosted a tiny muffin to be the dome, split in half, with a tiny clitoral chocolate truffle inside,and made everything else out of Hershey bars.

Max was delighted. I had to content myself with smelling all the sugary chocolate, because I’m still trying to lose 5 pounds. More torture. Still, the cake came out pretty good! And my smile was genuine.

Thursday, March 9, 2006


So I bought the Volvo XC90. In order to do so, I had to agree to a draconian financial agreement with Ned, which reduced my clothing and hair expenditures by 2/3. So I will be going around almost naked and with perpetual bad hair days. Not really. I believe I have enough new stuff from the last three years to get by on this feeble budget; that being said, I am already into May in terms of what I’ve spent in the last few weeks.

But it is worth it. I love the car. I call her The Amazon: she is a strong, sleek, beautiful warrior woman. I had to compare car insurance polices to get only the best one for her. She has a mouth-watering soft pale leather interior, a crystal-clear sound system, seats that are quick to warm with the touch of a button. Her top opens to the sun. She is fast and sure-footed. When I see her sitting by the side of the road, I sigh happily that she is mine.

She also has deep thirst for gasoline, which is something I hate about her; the miles per gallon in the ads were better than what I’m getting. So perhaps she is a bit duplicitous, but I, of the ever fudged budget can hardly throw stones.

Something happened with The Amazon that threatened to sour me on her. I discovered that the lease on my old Volvo, the Party Slipper, (my V70), was not actually up until August. I discovered this too late, after I’d already taken delivery on my Amazon, believing the Slipper was up in February. So now I have to pay for the Slipper’s lease until August. My thinking is that the dealer, Lee Volvo of Wellesely, from whom I’d leased both cars, should have known this and should have said something. If nothing else, he is profiting from holding onto my Slipper until August, when presumably he will turn it into Chase Manhattan, who holds the lease. While I pay $441 a month for a car I no longer possess.

Lee prides itself on treatment of the customer. Lee was ecstatic that I was a return customer. Why then do they not return my or my lawyer’s phone calls? Do they feel a bit guilty, perhaps? If nothing else, they are a shitty company that does not really care at all about the customer. Maybe you’re laughing because what could I expect from a car dealer? Well, I expected more than this almost-scam.

I let the Amazon get a little dirty, while I stewed, and it wasn’t until a friend pointed this out, saying, “Are you taking it out on her?” that I realized I wasn’t being fair to either of us — the Amazon or me. Even though she, like many good people I know, is ending up costing me far more than I bargained for, she is mine and I should be loyal to her.

So I took her for her first wash the other day, to one of those soft-touch places, because the dealer, Lee Volvo of Wellesley, MA — did I mention I hate them — told us that we should wait six months before using brushes on her, to preserve the paint job. In this car wash, an attendant drives the car for you, to the end, and you can watch the entire thing, walking along a glass-enclosed corridor next to it.

I watched the car go through each phase of her bath, from being sluiced with water, to being soaped up, and then rubbed down with cloths moving in circular fashion. But the best part was when she shot though the streaming towels and seven eager men ran forward with gray towels, rubbing and shining her softly burnished sides. Caressing her lovingly. I felt a rush of — heat and maybe even a little jealousy! To be so lovingly attended, and come out looking so dewey and radiant. I loved her as much as ever. More, now with what we’ve gone through with the circumstances of her terrible birth parents.

Susan’s Blog: Cave Blogem

I am told that I make this blog too personal, and some close friends and family feel voyeuristic reading it. I am also told that I’m an idiot for stating my opinions about certain current events. I won’t go into that here. Go into my archives if you want to know what I’m talking about.

My blog is my blog. Maybe I need a tag line, so that people will know what to expect and will not be put off in one way or another by reading it. My tag line would say something like: Susan’s Blog, about relationships, life observations, sex, fashion, comedy, autism, love, and parenting. I write about all those things, so caveat emptor. Or is it cave canem? Buyer beware, beware of dog. Maybe it should be cave blogem, and let the surfer beware.

Tuesday, March 7, 2006

Play-Doh’s Big Five-Oh

Play-Doh turns 50 this year. Unlike most things, that does not make me feel old. I guess because I don’t really believe it. How can Play-Doh have an age? Wasn’t it always around? I always had some on hand, literally, and when it was on my hands, I would eat it. Why not? It said, “Non-toxic” right there on the little yellow barrel. If it was not meant to be eaten, why make it non-toxic and more importantly, why make it so tasty? Also, who could resist those colors? Is there anything as delicious and sensuous as the brand new cylindrical wedge of Play-Doh fresh from the can, unsullied by fat little hands, the mouth-watering bits of drier pieces clinging to its smooth sides?

They are apparently coming out with a pack of 50 colors in honor of this birthday. Ned wisely asked, “What’s the point? They’ll all be brown in the morning!” But you know, there is a point. Just because the joyful purity of color is ephemeral, doesn’t mean it is not worth having for that brief moment.

Monday, March 6, 2006

Questions I Am Asked

I did a reading tonight and had a great time. I always do. I have never enjoyed anything as much as going around and talking about my book and my family to people. One of the best things about it is that people are so receptive to how I’ve written it and what I’ve got to say; it is extremely rewarding. The other wonderful thing is finding so many kindred spirits out there. It is tremendously validating to meet people who have gone through what I did and to hear about their kids.

At my events, I often am asked similar questions, which I want to list and answer here:
1) How do your two other boys react to their older brother and his autism? How do you balance their needs with Nat’s?
Everyone gets to have their feelings but must be sensitive in expressing them. But Max and Ben react very differently to Nat and autism. Max grew up with Nat, has always known Nat to be the way he is, and is a very centered, compassionate person to begin with. An old soul, he gets it. Ben is a very different kind of guy. Very black and white in how he thinks, to him a big brother should act like Max, not Nat. We are helping him articulate his feelings, but we also set boundaries (we don’t let him say mean things to Nat in front of Nat or Max).

We balance their needs by individualizing our attention. We spend time with just Max and Ben, or just Max, etc. We use sitters to accomplish this, if we have to. But quality time can mean a lot of different things: 5 good minutes of conversation with Max; 20 minutes of Legos with Benj; reading with Nat. We also try to keep things fair, and have each boy do chores, so that no one feels like anyone is getting a free ride.

2) How do you have any fun? As a couple?
We get out every so often, even if only for an hour. We create “bubbles,” little moments in time where we are not solving anything, or working on anything, but simply being together. We stay loyal to each other, by honoring the other’s strengths and dividing up the kid-labor. I’m better at the school and doctor and home interface; Ned is better at the community interface (taking Nat out into the world). We also pick and choose how we spend our time; we don’t do everything we would like to do: we don’t travel a lot, we don’t entertain a lot, but we do go out every now and then with friends or with each other. Above all else, we laugh — mostly at our kids.

3) What therapies/interventions do you recommend?
For us, medication targeted at certain difficult symptoms was effective. We use behavioral techniques for teaching Nat certain skills, and more and more we talk him through difficulties (we get him intensive speech/language therapy) and his language continues to grow. We find that sports and social groups are the best therapies for Nat. These are natural ways to teach him about the world and they are fun for him. It is good for his brothers to see the things Nat can do, such as running and swimming for the Special Olympics. We do not use biomedical interventions, but know many who have alleviated certain symptoms that way. We are not looking to cure Nat of autism, but rather, to help him be the best he can be. Same with my other two boys.

4) What is the hardest thing for you?
Going out in public with Nat has been very hard from time to time because of potential tantrums. But we do it anyway because it is good for him and good for the world. The hardest thing now is wondering if he’ll be okay as an adult, and what will his situation be when I’m gone. I’m doing everything in my power to make him independent, but who knows?

Learning What’s Write About Myself

You never stray too far from how you were as a child, though perhaps if you are lucky you learn how to compensate or protect yourself. It is easy for me to recall how I was as a child, to go back in time and feel myself looking out from wider eyes. I was very other-focused, which paradoxically also makes you very self-focused, but not always in a happy way. When you are too concerned with what others think, you become too concerned with making sure that they think good things about you, and then everything’s out of whack. My inner self is very carefully calibrated, even now as a far wiser adult, and it gets knocked out of balance far too easily (not a good situation for a Libra, but a typical one, nevertheless. There is a misconception out there that Libras are in balance; the reality is, they strive for balance but rarely stay within it. There are too many distractions, positive and negative, too many compelling thoughts and arguments to keep us completely in harmony, though we crave it.).

I am happiest these days when I am project-focused; when I have something interesting to do. My happiest days so far were the summer before last, when I had to finish my book by September. That deadline did not hang over me, however. It encompassed me as if in a golden light, buoying me and keeping me anchored within a purpose, a goal. That summer, Ben and Max had no camp, and they buzzed around me like the fat lazy bees out in my pink and blue garden.

As a child, I was often told, “Find a friend,” or “Go play,” words that did not help, but rather, filled me with dread. Find a friend? Who should that be, if they were not already here? And play with what? Wouldn’t I be doing that, if I wanted to? This admonition was like a sentence to me: if I could find a friend or play happily, I would have been doing it already. But I had no purpose, no project, only a vague feeling that I was somehow not right as I was. I would then look for someone else to reassure me that I was just fine, and that is how the cycle was born.

So I guess I have learned how to “go play” or “find a friend” or compensate, as an adult. I still have days of amorphous dread, however, where I think that the rest of the world seems to be so purposefully busy, and I am not. (And this is not about just getting a job — which became my parents’ mantra once I grew up and experienced the same malaise, the adult equivalent of “Go play” — because I have had jobs, and the feeling remained. This is not about being merely busy; it is about being purposefully engaged with something truly gratifying.)

By now I know enough about my amorphous dread; I understand it and recognize it like an old friend or relative. As someone who is in your life whom you did not choose but must suffer nonetheless. I now know that turning outwards to another person is not going to soothe it away. I now know that some days are worse than others. And I know, too, that the best way to feel good again is to look within, and figure out what it is I want to do. Most often, that means, what do I want to write about, and do it.

Wonder what would have happened if my parents had said instead, “Okay, write it down. Write about how you feel.” Makes me wonder what I am not saying to my own children…

Friday, March 3, 2006

Max and Macs

Max wrote this yesterday, when he realized that he wants a Mac, after all these years of sneering at them, including mine (I have a Mac, called “Precious” because she drives me crazy, a la Lord of the Rings, by always calling to me and making me write stuff and check email).

Anyway, could I be any prouder of him for taking after his geeky father, whom I adore, and surpassing him in cleverness?

Romeo and Macintosh

O mac comp, mac comp, wherefore art thou a mac comp?
deny thy Jobs and refuse thy G4 processor,
Or if thou wilt not, be but sworn my computer,
and I’ll no longer be a ‘doze user.

Tis but thy manufacturer that is my enemy.
Thou art thyself, though not a mac.
What’s mac? It is nor processor, nor RAM, nor monitor, nor case, nor any other part belonging to a comp.
O, be some other brand!

What’s in a brand name?
That which we call a Dell
By any other name would suck as much.
So the mac mini would, were it not a mac called,
Retain that dear perfection which it owes
Without that title.
Mac mini, doff thy manufacturer,
And, for thy manufacturer, which is no part of thee,
Take all my desk space.

Pharmaceutical Conspiracy

No, it’s not what you think! I have been thinking a lot lately about a guy named Perry Menopause. Actually, perimenopause, the slow, strange, torturous leading-up to the big M. I have never been the most stable person in terms of mood, but after visiting my doc yesterday, I learned that the approach to menopause makes that even worse! A magazine I was reading mentioned how you might also start to get some extra pounds around the middle. Not to mention — gasp — facial hair. My grooming already takes longer than I will admit here. When I’m 50, then what? I can’t stand the thought of it all.

So what is the solution? Drink soy milk for the estrogen, right? Take estrogen? Wrong! Here’s what I think: if men went through a male equivalent of menopause, there would be a harmless little pill to take to stem the tide. And guess what, there actually is: it’s called viagra.

The whole viagra thing stuns me. Men spend most of their lives trying to — excuse my bluntness — discreetly deal with the thing, and suddenly, life grants them a reprieve at age 60 or so, and they long for the good ole’ days!

Does viagra even have side effects? I’m so jealous. All we women can do right now to combat our change in life is to take estrogen, which is a bit dangerous, I had thought (in terms of being linked to breast cancer). So I have to choose between my breasts and my mood swings/thickening middle/hot flashes? Not fair. I’m sure I will get comments here telling me how ignorant I am and informing me of new options. Good, let ’em rip! I want to know!

I can’t help but think that if men went through menopause — a wonderful term because the process probably does give many men pause — there’d no doubt be an easy, relatively harmless pill to take to reduce the symptoms dramatically or even reverse them!

Thursday, March 2, 2006

A Kid to the Max

This is my middle boy, now 6’2″ and quite the young man. Tonight Ned and I will be attending our first high school presentation for incoming — ulp — 9th graders! Is this the little boy I carried? I don’t remember getting older!

But — March 9 will be 14 years ago that he was born. This was one of the best days of my life. My labor was actually a good part. Ned and I stayed up all night together, while the early labor pains began, and he held a tennis ball at the base of my spine every time I had a bad contraction. My sister and her fiance (now husband) John came over and took care of little Nat while we went into the hospital.

At the hospital, I requested an epidural, but the entire time, I could feel the pain. I kept saying to the doctor, “Hey, I can feel that!” Finally, they rolled me over to check: the needle had fallen out of my spine!

“It’s too late,” my doctor said. “You’re at 8 centimeters. You’ll have to just blow through the rest of it.”

Oooh, I wanted to kill her! But I persevered. Ned kept me conscious, saying, “Look at me, Sue,” every time the pain ripped through. Max was born pretty fast, needless to say. A big baby, 8 lbs 9 ounces — it’s funny how you never forget stuff like that. I looked at him and was confused — who was this? He didn’t look like the baby I was used to (Nat!). I could not stop looking at him. I still can’t, but I do it covertly.

Max came into this world with a burst of joy — and relief. He continues to give both to all those around him.

The Lion Sleeps Tonight

Yesterday was the first of March, as we all know. The proverbial Lion has arrived. I had a terrible day, and I’m sure that the gray crustiness that spread out before me everywhere I looked had a lot to do with it. Also, things have been really rough for a friend of mine/with a friend of mine. It is hard to keep one’s perspective (thank you, Andrew!) in what looks like the Dead of Winter (capitalized because it is a real institution to me, not simply an expression) even though I know spring lies just underneath the dirty gray blanket of snow. Even though I know my friend loves me, it is hard to feel it when things are like this.

Of course, happiness, like spring, lies quietly, hidden and muffled by all the noise that surrounds us. Last night, while picking the feta, spinach, and hot peppers off my pizza (I don’t eat the crust), I caught a snippet of Nat’s silly talk. He said, “Wimoweh,” very quietly.

“Wimoweh?!” I said.

“No Wimoweh,” Nat said. But he was smiling, my invitation.

I started humming The Lion Sleeps Tonight, softly, not looking at him, sneaking up on him the way I think he likes best. I peeked at him and he was listening intently, smiling. I kept going, for as long as he would let me. I eventually ran out of words; it is a fairly limited song, after all.

But Natty’s song, and his little secret smile, helped keep the lion in winter at bay, if for just a little while.

Wednesday, March 1, 2006

The Autism Club

I have a column at a local paper. I wrote this article for last week’s paper, and a fellow blogger took offense. My lede had been the story about Abubakar, the 5-year-old Maryland boy whom it is believed died of errors ascribed to his chelation treatment for autism. As I’ve said before, there is a deep and severe division between autism parents as to whether autism is an illness from which one can recover, or whether it is a different neurological wiring to which one can adapt. Several friends on both sides of the chasm jumped to my defense, which made me feel really good, but I did wonder if I was wrong to come out so firmly on the side that questions recovery. I have been trying to straddle the gap, because that is who I am: a Libra who always tries to see all sides of an issue. I want to be fair. But I really do believe that there are kids out there who present with symptoms that look like features of autism but which are actually something else, and so the biomedical interventions might in those cases have an effect.

The primary issue, to me, is not whether to treat, although I know that this is the issue for many. The issue for me is that when some kids’ issues improve and others’ do not, the parents feel like they have failed. That is the piece that moves me. A good friend of mine who tried many, many things to little avail has confided in me that people have sneered at her that she has not done enough, or has not done it right, or he would be “better” by now. This is the problem with the debate.

It is my belief that we have to acknowledge that there are some forms of autism that look a certain way and act a certain way, while other forms do not. Or possibly, there are ways of being that look like autism and are not. There are also people who believe that their children are perfect exactly as is, “warts” and all, and who steer clear of non-traditional, even potentially harmful treatments. Others think they are crazy not to try every, single thing out there, devoting ones life to treatment (as one well-known autism-fighter puts it, “No finer cause on the planet.”)

I believe that an even better cause for the planet would be teaching tolerance for difference, whether it means tolerance for a different opinion from your own, or tolerance for the full spectrum of people we come across. Tolerance/inclusion is not about hitting people over the head with your viewpoint, but by providing gentle example. At any rate, if we’re all doing the best we can, which I assume we all are, that should be the bottom line. Autism should not be the club we use against each other.

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