Susan's Blog: August 2007
It's Conversation, Stupid!
It's from this that you get yer strength, Katie Scarlet: The red earth of Tara!-
--Gerarld O'Hara, GWTW
Something about the blissful monotony of seaglass-blue sky and white-hot sun
And the desperation of repeated frustration and anguish
Produces an unlocking, a stretching of the mental joints
The muscles in my heart ache from overuse in one direction: why, why, why does he do that? what, what, what is it? how, how, how can I stop it?!
You don't stop it.
You turn towards it.
You don't fight it; it is a riptide. It is yet another hill, in top gear, after hours of riding.
You push on that pedal anyway. Push the muscle one more time, with no reserves left.
You push and pull, push and pull. You just move.
And you climb. You dive. You turn towards him. His seaglass-blue eyes are as wide as the sky, and full of something.
Questions. The obsessions are really questions?
How does the world work? What will happen next?
Tell me again. Tell me the story about the weather. Tell me the story about what everyone will eat, when, and what will happen after that. I love to hear you talk about it, the same every time, maybe a little bit more added each time. Conversation like treading water. Seeming to get nowhere. Paddle in one place. But you look up and you have moved somehow.
And he is smiling.
We All Scream
Just when I thought my summer had hit its zenith, literally, in the mile-high state of Colorado, I took off with my boys and my sister and her family for good ole' Cape Cod. Same lovely house we always rent, hardly any cooking, beach, bike ride, bronzing. Ned swims in the ocean every single day. Ned also borrowed a strange pyramid-like object that brings the Internet to this house, so we are all wired. And Nat, darling Nat, is in his element. As long as we discuss (several times)each new plan, and each person's role in said plan, again and again, he is happy.
The only problem? Too many carbs!!!!
Every night of our vacation we have been eating ice cream. Laura and I try not to, but, well, peanut butter cup happens! ... See my Tabblo>
On Total Vacation
Photos by Ned
Concept by Benji and Susan
Sun and sea by...
... See my Tabblo>
The Icing On the Cake
Poor Natty. Here he is, saying, "Cake. Want ice cream cake." I had bought one at Emack and Bolio's, half vanilla, half mud pie, pink icing, plus a pint of low-carb caramel pecan (for Laura and me, to celebrate Kim's and Paul's birthdays. They stopped off here for dinner last night on their way to Cape Cod, where we will soon join them.) and some hot fudge. Natty waited patiently for his cake, but his bowels were not patient; turns out he picked up the stomach virus that had been making the rounds at his camp. Probably his 3 a.m. puking Saturday night should have clued me in, but I'm such an optimist, I thought it was all the excitement from the trip. I should have known; barfing is usually not Nat's preferred mode of expressing excitement. Animated silly talk is, but his puppet hand had yielded no clues, either. Oh well, the cake was good; yes, I snipped some of it; it is that kind of lovely eating habit of mine that probably contributed to my skyrocketing cholestrol. F***ing Atkins. Well, why blame the fat dead man? He never said it was okay to eat fat, protein, and then pig out on chocolate (the mother lode of carbs).
I have no one but myself to blame, to quote Bob Weir yet again from Mexicali Blues.
I think Ben might be getting it, too. But really, enough of this _ _ _ _.
Golden Night
Heaven's holding a half moon
Shining just for us...
--Maria Muldauer
This champagne-colored cutie is my latest acquisition for bellydance. Tonight I danced to Warda, I Put a Spell on You, Amerain, and many other beautiful Middle Eastern songs. ... See my Tabblo>
Right Hair, Right Now
She had raven hairA ruffled dresssA necklace made of goldAll the French perfume you'd care to smell...--GFD, "Mexicali Blues"The theme of today seems to be hair. My family is blessed/cursed with heads full of thick hair. We all forget to make hair appointments -- I truly hate making any appointment, and I am always prone to canceling, except for nails. My own hair issues will be attended to after my final vacation at Cape Cod because I have to wait for all the sun damage to take place before I get it all "adjusted." Such adjustments cost big bucks and take many hours, but as the L'Oreal ads used to go, "I'm worth it." I guess. Ned keeps telling me to just go gray and I say, "Never!" He still doesn't get it: he married a high-maintenance chick. And it's only going to get worse.
Yesterday Max told me he was done with the dreds. I saw it coming, because all summer he has been complaining about all the necessary "maintenance." (WTF?) Meaning, he is supposed to wax them regularly, dry them thoroughly after the once-a-week washing with the special "residue-free" shampoo, and spray them with saline solution to roughen them. Compared to what I do daily, I cannot believe this is maintenance. But that is the way it is for Max. So we spent a lot of yesterday combing /ripping/cutting out knotted hair. I finally figured out that lemon juice helps dissolve that tenacious wax.
Tenacious W.
So nice to
see Max's silky blond hair again (he writes about it very sweetly in his blog)! And --ouch-- so much of it lay on the table in little balls. We pretended to be cats choking up hairballs, but I think I really grossed the boys out with the accuracy of my portrayal.
And now Ben is talking about wanting the green hair dye again, which I allowed him on St. Patrick's Day. Sigh. Nat seems content with his mane of wavy blond hair but Ned is not. He wants me to take all of them for appointments asap. Not so much. Sorry Neddy Sweets, you are going to have to do that one. I love their glorious locks, and I have much too much to do right hair. Like my nails, and some fall clothes shopping. Oh, yeah, and write my book.
Je Suis Revenue
More Than Just Getting Through It:
How Parents Make Peace With A Child's Disability
This will be a book of in-depth, gripping interviews with parents of kids with disabilities, all issues, all ages. But told with the view of empowering parents to find happiness with the lives they have been given, from parents who have discovered a thing or two. With a little bit of me thrown in, but really, I hope to learn from all of you as I write this...
Que pensez-vous?
Leavin' On a Jet Plane: Day Eight
And the winds swept through Colorado [Georgia]...
...NATTY! [SHERMAN!]
--Gone With The WindDay Eight: Back to Boston. We left Aspen and headed to Snowmass to pick up Nat from his camp. Each of the campers swung into view via a ropes course! When Nat finally disembarked, he got a lot of cheers and hugs. Fifteen hours later, we were home!
... See my Tabblo>
My Favorite Hike: Day 7
This hike up to Linkin Lake, a hanging lake in Aspen, was extremely strenuous and scary. Just my thing! At times I felt like my throat was bleeding, I was exerting myself so much. Neat.
From Arches to Aspen, Day Six
Day Six we left Cortez to go to The Arches National Park in Utah. As we drove, the terrain changed yet again to flat, dusty fields, and then red sandy rock.
We came to a huge Totoro-shaped blob first, but could not climb it because it was fenced off (though Ben was willing to try). Then we came to an arch that was just perfect to climb, but I got freaked by the height.
Arches was stunning, Mars-like, bizarre, beautiful, and beastly hot. Still, we saw quite a bit of it, by car and by foot.
Drove another three hours to Aspen. Tomorrow is the last full day.
... See my Tabblo>
Collie-Rado, Day 5
This was my least favorite day, because we left Telluride. It was Ned's favorite, because Max rode a segue and loved it. I was sick for some of the day, too, and had to nap in the back of the rented Durango.
The fifth day began with me going shopping in Telluride and Max talking about how he kinda sorta maybe wanted to ride on a segue. Harold, the segue guy, was once a New Yorker, so he and Ned really hit it off. He gave Max a free ride, Max's first.
Then we left Telluride :-( and drove a few hours to Cortez, with the plan of seeing Arches the next day, which we did. On the way to Cortez there were lovely thunderstorms that we sometimes did not actually encounter, but we would see the lightning and hear the thunder a long while later. We also stopped at a stream. I started to feel sick . Luckily, the car was big enough to let me lay down in the back for a good nap.
We ended up having dinner in Durango, a cool Western town. I think the restaurant, which was a part of the Strater Hotel. was decorated in High Whorehouse style. Still, a lovely meal. Even Benj thought so.
... See my Tabblo>
Colorada, Day Four
Day Four was our full day in Telluride, named after the element "tellurium," although legend has it that the name is actually a contraction of "To Hell You Ride," which I like much more. Telluride was/is known to be the bad boy of Colorado towns, and I think it is the most interesting of all that I saw. It seemed to me to be a combination of San Francisco-meets-Provincetown. What could be bad about that? Only if you mean "bad" in the good way!
In the morning we hiked partway to Bridal Falls, a two-mile hike that took us three hours because of the effort to climb that high. Simply scrumptious. In the afternoon we walked around and shopped, and ate ice cream at Sweet Life. And then, at night, we took the gondola up to the top of the mountain to see stars. I got spooked when a deer jumped out of the woods and ran back to the gondola shed with Benj.
... See my Tabblo>
Day Three of Colorado Trip
This is Day Three of our trip, when we visited Crested Butte, which I adored, (the most sumptuous inn I have ever stayed in, Crested Butte Club and Spa)and Black Canyon of the Gunnison, which I'd seen as a little girl.
The news from Nat is that he is totally happy and participating in everything, although he did not love the lake/waterskiing as much as one would think because, well, it was not the ocean! That's my boy.
Today I am in Aspen, and this is our last full day. Home tomorrow night at midnight. I just saw a bear while I was walking to get a latte. Now I'd say it was a perfect vaca except that my Natty was not here.
The third day of our trip, we left the Aspen area and headed up to Crested Butte. This may have been my favorite town in Colorado; a perfect gem of a place with preserved Victorian false -fronted buildings and funky boutiques (not a chain in sight), and of course, magnificent mountains on all sides.
After Crested Butte we headed to Telluride by way of Black Canyon of the Gunnison, an incredibly steep canyon.
... See my Tabblo>
Colorado Day Two
Friday is actually our last full day here, but it is difficult making Tabblos from hotel rooms...
On our second day in Colorado, we hiked a little in Aspen, took the Silver Queen Gondola up to the top, and after lunch, we took Nat to his camp in Snowmass. Then we drove to Crested Butte, a lovely little town nestled in the mountains near Black Canyon of the Gunnison.
... See my Tabblo>
I am posting this from Ned's laptop, sitting at an outdoor cafe in Telluride, Colorado. I am feeling so good, it is hard to believe. Mountains everywhere. It is just nuts, how breathtakingly gorgeous it is. I hope Cape Cod is not jealous of how much I love Colorado.
The tiniest bit of Natguilt, but I have talked to Stephanie everyday so far and she tells me how smiley he is, doing horseback, swimming at Glenwood Springs hot springs and doing big water slides. He left me a dear little message last night on my cell, while we were taking a gondola to the top of the mountain to look at stars!!!!! His message said, "Hi, who's this? It's Nat. I love you [this was prompted, I could hear her doing it, but I care not. I heard his Sweet Guy voice and I saved it.]
I will try to post Tabblos of each day, and I have Day One, the flight and arrival in Aspen, when Nat was still with the fambly of five. I have trouble posting your comments so don't be offended if they sit in Blogger limbo for a few more days, it is not you, it's me.
Thanks all of you for pushing me to go on this trip. I feel ten years younger (which makes me 15!)
On Saturday we flew to Denver, to spend a week in Colorado while Nat went to a camp in Aspen. Here is how the first day went. ... See my Tabblo>
Going, Going...
There once was a woman named Sue
Who had far too much packing to do
For her family trip
If she made just one slip
Their plans could all turn to doo-doo.
So she made her boy lots of Nat books
And calendars and Tabblos so he'd look
At the pages inside
And enjoy the plane ride
And we could be off tenterhooks.
Still, you wouldn't believe my day
Max and Ben had their check-ups, by the way
Ben made the doc laugh
Max's growth -- still off the graph
And I'm somewhere between "Oh, God," and "Oy Vey."
But really, I think we're all set
There's nothing left for me to forget
Bathing suits? Meds? Make-up jars?
I even got 15 Atkins bars.
Colorado: You ain't seen nothing, yet!
Eine Kleine Nachtmusik
So the last two nights I have been trying to do what a therapist suggested: at dinner, each of us tells the others one thing he/me did that was good today. The first time I did it, Ned wasn't there for dinner, and Max rolled his eyes. But we each managed to crap something out. I had prompted Nat a little bit, to talk about art class, which he loves. I loved watching Ben and Max pay attention to Nat, loved the surprise that flickered through their eyes as he expressed himself, a bright, brief flash of son-shine.
I also am amazed at how it actually works, and makes it feel like a Real Family Dinner. It is utterly ironic, because it starts with a strange and marked effort, but it is similar to fake laughter, where it begins totally forced and artificial, but always ends up as the real thing. The first night we then went off on a tangent about their cousin Paul and what to get him for his birthday (he is such a Leo, even down to the mane of blond curls surrounding his head). I repeated a few salient details to Nat, to keep him a part of things.
Last night, I made us do it again, and Ned looked at me like I was nutz. (not that there's anything wrong with it) But Ben looked a little excited, because he could think of something he wanted to tell. I helped Nat talk about his community outing at school where he had ordered and purchased chocolate ice cream. I talked about the highly animated argument/great conversation I had with my agent, Ned talked about some stuff he'd accomplished at work (sorry, it did not compute), and right now I can't remember what the other two talked about, but they talked. Music to my ears. As stilted as the thing was, it really, truly made me feel good.
Gone Fiction
You are like the hurricane
There's calm in your eye.
--Neil Young
I just watched Nat crouch as he walked down the front path to the bus, trying to avoid the heavy raindrops. Such a mensch. He hates the rain, hates the fact that his brothers stay in bed while he has to go to school, hates the fact that Ned and I eat our breakfast sometime later than him; yet he just does what he's got to do. He did ask me several times if the rain would stop and if it was still summer and we were still going to Colorado. I just wanted to crush him to me and kiss his fuzzy face! I see how anxious he is, and yet he just totally held himself together. I could learn a lot from his fortitude.
I am not quite as stoic. I feel battered by the winds blowing through my life right now. My expectations have been laid low to the ground, in anticipation of the next storm. But give me a few days of son-light, and I forget all about the hurricanes.
Today I am going to write, but it is going to be fiction. That's the way it goes. Before Making Peace With Autism, I wrote novel after novel. Historical shit (I have a Master's in 19th Century Russian Intellectual History from Penn; my thesis was about Tolstoy's worldview -- I disagreed with Sir Isaiah Berlin, of "Hedgehog and Fox" fame -- in War and Peace, which I read in Russian, da, koneshno) with convoluted plots. But there was also a huge dry spell of nothing. Ned and I have a joke, where he says, "I'm not a software engineer anymore," and I say, "I'm not a writer." Because we both have our days of desert and drek, when he can't think of anything to blog or new cute little programs to write. And I just stare at Precious' vacuous face and I want to snap her lid shut or strangle her with her clunky white cord.
During those times, we just gotta do other things. We gotta be like Nat and remind ourselves that it is still summer, thank God, even though the air smells fishy and thick. Somewhere out there, crisp and clear Colorado and Cape Cod cavort, just waiting for us to join them. Have to crouch and go out into the fish stew first to get there, as Nat already knows.
Mid-Life Fantasy
Something I saw years ago, when I was first married and living at 4413 Pine in Philly, was
Felicia and Frisco's fantasy honeymoon. I believe this is where it all began for me. Sean Donnelly had decorated his penthouse Arabian style, with festooned colored gauze and tents and pillows. And Felicia, of course, wore a great BD outfit. Frisco was a sheik, and looked like he felt both foolish and in love.
For my 45th birthday, I want to suspend chiffon from the ceiling of my entryway and staircase, all the way down to the livingroom. Nothing but candlelight, but tons of it. The coffee table would be gone, so that there would be a large area for dancing and for people to sit. There would be pillows everywhere so that my guests would be comfortable. The spicy aroma of Middle Eastern food would fill the air.
I would have something like George Abdo's Misirlou going on the stereo and I would come down wrapped in veil, zilling. I don't know which costume I'd wear; maybe my new gold or I might buy that gorgeous Eman from Dalahl.
I would have a bunch of my closest friends there as well as Laura and my parents. It would be my debut performance, my declaration that age and any other challenges won't beat me. Columbus Day Weekend. Mark your calendars.
Cant
So much for that. I turned down my publisher's offer as it stands. Not gonna do it. Can't talk about fun and happiness the way I've been feeling. All those cool, happy things I thought I'd discovered? Nah. Not so much. Also, I can't figure out how to interview all those people and somehow do justice to their stories. How do I write about my process, my thoughts, my journey, from my heart, and then weave in ten other strangers' stories? I don't see it. I can't, can't, it would be a load of cant. No. I'm in the middle of it all right now -- a vortex of tsuris -- and when I come though it, I'll have a lot to say I'm sure, but now? It's if at first you don't succeed, cry, cry again.
I counter-proposed a book to them and also sent in my historical fiction, about 1905 Russia. My publisher does historical fiction, too, it turns out. But "only two or three a year, and from established writers." That's the Catch-22 of the week. How do you become established? Where does that start?
Feel like the biggest loser since Bill Buckner opened his legs. How can a person like me get a large teenager off to camp on an airplane and then drive around an unknown state, pretending to be an adult? I'm so nervous I feel like puking, but maybe that's cos I was wrong about fudge.
My Meadow
Though it's been
Over a year since,
I still wish
I hadn't done it.
Because I think
I feel
I see
A shadow, a ring of dirt, a haze on the soft blue sky; you
It.
Sprouted out of boredom
And ugliness
And nothingness
like a dandelion through old cracked cement, taxi-cab yellow, a slime-green stem
Never mind that it
seemed to be some kind of intoxicating, exotic flower
(Or so I thought.)
Like the lily he once bought
me. Overpowering smell of sugar, too tall, sticky, bent, shriveled too
soon.
Nearly killed me.
You can (almost) die of sadness and regret. Unless you lie down
under that sky.
Turns out, I didn't need to know about the store-bought flowers with their garish,
dyed hues
And their crinkly paper.
$9.99 a bunch.
I had a sunny meadow
I have a sunny meadow,
under a hazy blue sky
You Can Fudge Happiness
Okay, so there's the light at the end of the tunnel. I see it. It's so bright it is blinding me. Good. It has now been a week -- knock wood -- that Nat has been happy and calm. He is still very animated and interested in what others are doing, especially at dinnertime, but not in a way that gets him upset. I sure don't mind discussing once or thrice who is going to use salt and who is not; that's just dinnertime conversation! It was just so difficult before when no answer seemed to satisfy him. Or we all had to pretend to use salt on everything just to placate him. But tonight I even said, "Max might use the salt, but sometimes people don't use salt." The dreaded, ambiguous "sometimes." Nat then repeated his desire to see Max use salt, but only once.
On Friday we went to his doc and talked meds, which was a good thing. We came up with a longterm plan for him, which may involve a small dose of an anti-seizure medication. We are going to see if his new, higher level of Risperdal is helping his seratonin, etc. He is still on a fairly low dose of Risp., and I'm glad we don't have to increase it yet again.
We also came up with a shortterm plan, to help with the difficulty of the airport and the plane ride. We now have Klonipin, which may make him sleepy, but that would be good for all the travel mishegos. I am going to call our airport Monday and talk to someone there about special considerations. For example, even if Nat knows to expect to take his shoes off to go through the x-ray, he will not like it and there is a chance for an outburst at a very bad time and place. I have a note from the doctor, too.
I gotta start packing and figuring out what to take and how much. Very exciting, but also vomit-inducing dread.
What helps that every time is
a snippet of fudge. And since I had a lot of anxiety, I had a lot of fudge. That stuff is unbelievably good. Nat and I share an ability to eat infinite amounts of fudge without getting ill. We eat it until it is gone, not until we hurl. Fudge, for me, is the Anti-ralph.
I bought another brick of the stuff last night, because I went to Provincetown with Laura. We went out to dinner, got incredibly sloshed and then we were only a hop, skip, and a jump (especially a skip) from Provincetown, so there we went. I told her I had to get more low-carb taffy and more fudge, the miracle food for Nat and me. Et voila, they had cookie 'n' creme fudge, which I bought for Little B, my Oreo fiend.
We also went into Spank the Monkey, or maybe it was Hocus Pocus, and bought me, for the first time, a handful of new navel jewelry: a teensy red die, a little peppermint-like pink and white ball, a purple disc, and a tiny amber rose. The amber rose is to go with my new bellydance costume,
which I bought while depressed a couple of days ago. It is gold colored, with bronze and gold beading. I think I will feel completely like Cleopatra in this one (yes, that's a good thing). I have not received it yet, but soon, soon. A new cossie feels as good as fudge, and is far more flattering.
In the Thick of It
It's that little souvenirof a terrible yearwhich makes my eyes feel sore.--The SundaysThis will probably go down in my history as the worst summer in my life. I have been battling my own depression and Nat's anxiety, as well as dealing with Max's new teenage attitude of distance. That is not to say that every single day has been bad, not at all; but I have never felt so discouraged for such a long time. I am discouraged about how to help and reach Nat and I am discouraged by my own inability to remain positive and avoid self-destructive behavior. The worse things get, the more worn out I get, and then I am less able to do what I need to do for anyone.
And yet I see that there has been an improvement in Nat. The pre-warn is a very good thing for him, by which I mean a simple reminder of the salient points for the following day. He was happy this morning. Ben, however, has just about had it with him and has been yelling back at him when he starts to obsess. Ben feels like Nat pushes him around. There is alot to balance here; Ben is not allowed to be rude but he certainly can feel however he feels about his brother. So I talked to him for a while last night in the privacy of his room to get a sense of how he's doing. I tried to point out Nat's good qualities but Ben does not want to appreciate Nat these days. Still, I think it's important to remind him of Nat's overall sweetness, helpfulness, and progress. I have to hope that this helps somehow.
I check in on Max however much he allows. He is building a computer for Ben (it is a surprise) and I am so blown away by this. I am so glad that he is kindhearted and wise. Even though he has his flaws (he is very sedentary and technology-oriented) he is a delight. I love the way he loves Ben. The two of them fit together like a puzzle. I wish they could include Nat more, and I am trying to come up with more things they all three can do together or have in common. Ben's therapist suggested even going around the dinner table once and telling a joke (or trying). I don't know. I don't want Ben to become even more exasperated with Nat. Maybe we can vary it, and each person do their favorite stim, instead. Mine would be either twirling my hair or clicking "get mail" on Precious. Nat's is probably squeezing words into different shapes and creating a rhythm out of them. Max's is maybe rolling his dreadlocks; Ben's got a funny little throat-clearing cough. Ned's favorite stim? Humming and tapping. It's my clue that he's feeling happy.
I have a feeling that when this period in my life is over I am going to have learned a lot. But right now, I'm in the middle of it and just holding on.
And their crinkly paper.
which I bought while depressed a couple of days ago. It is gold colored, with bronze and gold beading. I think I will feel completely like Cleopatra in this one (yes, that's a good thing). I have not received it yet, but soon, soon. A new cossie feels as good as fudge, and is far more flattering.
