Typing away on the big old Dell…
Of course, the lack of Precious frees me up so much (when God closes a door, He opens a window, or Windows, as the case may be).
So yesterday was a Boys day. Max had been sick Friday night, (unbeknownst to Ned and me, who were at the Ben Folds concert at the Orpheum Theater downtown. Ben Folds is Ned’s favorite. I love him, too. He’s a very angry piano-rocker, of the Elton John/Billy Joel mode, but for this generation. Listen to “Landed,” and you will know what I mean.
We were, of course, the oldest people in the theater. No matter, we made friends with the kids next to us. We were just loving the tunes, as the youngsters say, when the worst thing that can happen to parent out on the town happened: the cell phone buzzed, and it read: “Home.”
We could not hear so finally I had to run, run, run, outside, screaming into the phone, “What? Max, text us, okay?” I get the text: i threw up.
We determined how he now was, and what to do. He was okay after the one episode, thank God.
Next day was, therefore, a day to be home (no friends or girlfriends). We decided it would be a costume day for M and B. Max needed a long, voluminous brown cape. Ben, a Kafei costume. We looked at cosplay. com and found a forum that explained how to make a pikachu-like mask out of model magic. Ben and I figured out the rest, and off we went to Joanne fabrics, the four of us, to find stuff.
For Ben’s, I had already bought some blue sweats, a blue top, and a white top, all to cut up into the shapes of the costume. At the fabric store we bought interfacing to stiffen the decorative flaps on the top; fabric paint to decorate, a plain plastic mask and model magic, brown felt for the yoke of the top, and a purple wig that we would style later on. “Are you sure you know how to do that, Mom?” Ben kept asking at each step of the operation. “Cause, no offense, I’ve seen some of the stuff you make.”
It was decided that Ned would make the mask with him.
I then bought a “simple” McCall’s pattern and 7 yeards of fabric for Max’s cape, which spilled like a river of brown corduroy, spreading all the way from the entry hall to the livingroom. Max cut out the pattern pieces from the tissue paper and had his first introduction to the strange and archaic language of sewing. “Why do they use such delicate paper?” and “This is utterly incomprehensible!” and “What is a nap?” and so on. He kept saying that “the virtual world is so much better than the real, physical world,” which alarmed me. “What are you going to be, a hermit?” I asked. “It’s true, this world is not perfect. But in the virtual world, you can’t touch something…” Then I let it drop, and just now I remembered when Max was a toddler and how he would refuse any cookie that had the slightest imperfection: “I want the fixed one,” he would say. So, okay, I get it.
But sewing is strange, and yet it is wonderful. You start with this mass of flat fabric, and as you lay out and pin and snip, you start to get shapes that are more manageable and that make sense. I told him about how when you sew, you can call upon the Spirit of Irving to help you. He smiled at that. My Grandpa Irving Senator was a tailor, and he could make the most beautiful alterations. He fixed anything, using the tiniest scraps of thread, or “cotton,” as he called it, letting not a thing go to waste. He would sit at my fancy sewing machine, and turn the wheel by hand, which is the way his old machines worked, and I would tell him over and over that the wheel only went one way and it was powered by a motor. “See, Grandpa?!” I’d ask in a barely-controlled panic. He’d nod and then do it his way. But actually the machine never broke.
I showed Max how the pieces would fit together, and suddenly he started saying how he was going to have a huge awesome cape. We decided to stop when all the pieces were cut — even though Ben wanted to continue onto the painting and the gluing and the making of the bell sleeves of his costume. I told him you have to stop when you’re tired or you start to make mistakes.
We all settled down to watch some stand-up comedy on Comedy Central, all of us content that it had been a day of purpose and success.
Precious has died. Long live the Queen.
I am using B’s huge PC desktop, the one that Max built for him. I get my email at most twice a day, because it is such a pain. Twice a day! Me! Actually, it is good for me. I get an idea of what it is like to sit in the livingroom and just sit in the livingroom, sitting, just, living. In the room.
Coincidentally, I had just gotten my contract, literally (no pun intended) — the actual three copies to be signed and returned to Shambhala — and then Precious blacked out. She was just holding on until the next new phase could begin, bless her artificial soul. Ben actually cried. I got a little emotional myself. I have been through so much with that computer! I wrote MPWA on it. I began this blog on it. I developed an email obsession on it. I wrote Dirt on it. And I conceived the new book concept on it.
Now that Precious has expired, I found out that we had not been backing up all my shit on a regular basis. So, after many attempts on Max’s part to resucitate (all kinds of old Mac boxes exhumed from the third floor, thick white aorta-like power cords, hook ups from one laptop to another for transfusions, and then waiting, listening in horror, while her fan roared awake to a black screen, and then a strange high-pitched moan followed.) we had to bring her in for major surgery — really more like an organ donation at the site of the death — to get her heart and some of her brain out. Her memories are full of all my important stuff: email addresses, conversations with friends, loved ones, publishers, editors, agents, kids’ teachers. Jeez. When the “genius” at the Apple Genius Bar told me that “We might not be able to get to your hard drive stuff if it is truly fried,” I felt my stomach drop. “Neddy!” I cried into my cell phone, “They might not be able to do it!!!”
“They will, Sweetie, don’t worry.” If Neddy says so, then it will be so.
As long as we pay them $150. Plus they did not give us the Educator’s discount because I was not there when he and Max bought the new MacBook. So that is like $250 that Apple screwed out of me. Apple doesn’t need that money! And I could have bought a gorgeous bag to go with the New Laptop (whom I will name when it is clear what that name should be, if anything. It seems kind of lacking a personality, so clean, so white, all the letters right there on the keys, and the screen is a horrible stretched-out rectangle rather than Precious’ pretty little square shape (she was an iBook G4, which they no longer make)!! And by the way, if they can make all those colors in an iPod, then why can’t they offer their Macs in colors? What’s so great about white, black, or God forbid, stainless (which is akin to saying your favorite color is “clear,” which is funny but also sad).
What’s their problem? Something rotten in the core there.
The people that you meet
When you’re walking down the street
They’re the people that you meet each day!
— Sesame Street
I feel I need to devote a blog post to the people in my life, rather than the objects, who are also Keys to the Universe; no-fail relationships, people that pretty much always do what I hope for. They are people I do not really know very well, but I’m always happy to see them. (I am probably not going to list obvious loved ones — Ned, the boyz, Mom, Dad, Laura, et al., because those relationships are eminently satisfying and also at times deeply frustrating, but completely necessary to my most colorful happiness.)
1) The shoe repair man on Alton Place. It is a less-well-known fact that I am incredibly hard on my shoes. When I love a pair of shoes, I wear them all the time and, trust me, they never have a rubbery or resilient sole. They are often simply pretty and therefore ephemeral in their structure. So to my little shoe repair man, I say, shoes off to you for always restoring my chausseurs to their original appeal.
2) The dred-locked Barista at Peet’s on Harvard Street. She never remembers my name, but who cares? I’ve given her made-up names before, so she allows me to be “Lilia” at times. Anyway, she makes me my high-maintenance drink, as foamy as I need it to be, every time.
3) The dry-cleaner on High Street. He is unfailingly cheerful, and always gets out every single stain, can sew anything, even foil-wraps my delicate buttons, and never shrinks anything.
4) The guys at Pizza Stop, Cypress. Where would an exhausted mom be without weekly pizza take-out? And now, when I call up and say, “I’d like some pizzas delivered,” they immediately say, “What would you like, Dear?” and then they ask if it’s me, just to be sure, and then they help me remember Ned’s complicated toppings. They say, “half an hour,” and it’s always less.
5) The crossing guard policeman at Cypress and Walnut. He is so careful with all the precious little people who cross by him, and also doesn’t make me wait too long when I need to make my left turn in my car.
6) My mailman. After he delivers the mail, he takes a long jog through the neighborhood. He also stores some of his things on my porch because it feels safe to him.
7) The tree guy, Dave, from Hartney-Greymont. He knows how to give me more sun, and he always asks about Nat.
8) The guys at Family Restaurant. They make my Greek salad exactly the way I need it to be: romaine, rather than iceberg, (what’s the point of iceberg, folks? it is like scrunched up paper and cold water.) They are the best-natured guys in the world: I can imitate them, and they have a really funny sign outside, and they never get mad if I laugh at it.
9) The cat outside the Institute of Psychoanalysis in Washington Square. He/she/it is black with faint dirty rust markings and his meow is rusty, as well. He is one of those love sponge cats who just wants to walk in figure eights around your ankles. I always say, “There’s that funny cat that I love! Hello, Sweetie!”
10) The guy who packs bags and brings back carts at Stop & Shop, the French guy. He knows how to pack exactly the way I like it, as if he knows the very layout of my cabinets. He puts pasta with cookies; tuna with kidney beans; all fruit together; ice cream with Purdue Done It, which I freeze, cereal and nothing but cereal. No tiny bottles of spice forgotten and thrown away, hidden in the rumpled the bottom of a bag of freezer goods. Once he followed me out and unloaded my stuff for me. I’m sorry I forgot his name at the moment, this happens to me more and more lately. It’s at the tip of my tongue.
I wrote the recent “Lunch Hour” post about Nat and me, out at Paparazzi on Friday. I took him there after his annual checkup at the doctor, right before his annual EKG (because of the Resperadone). I wrote the post that way, in third person, because the idea occurred to me during our lunch. I was keenly aware of how nice it was, eating in this pretty, elegant place with my grown-up child.
As we ate, I kept glancing at Nat, so composed, so much a delightful young man, (and so well-behaved!) that I realized that no one around us would ever guess that he had a profound disability. To think that this was the same person who — God forgive me — made me feel imprisoned by his unpredictable behavior. Who, at age two, had cried incessantly at every family gathering. Who, when he was four, cried and yelled through an entire meal at a Cape restaurant while the host tried to get him to stop or us to leave (he didn’t; we didn’t. Three years later, this was the same restaurant where Nat showed us that he had learned to read: W-H-A-L-E spells ‘whale!’) Who, at eight, tossed a pieced of chicken or something into the air which hit at a man at a nearby table. I could go on and on. I would never have believed us today.
I kept imagining an observer at another table, listening to our staccato, syncopated, but acceptable conversation. The way Nat would look at me, dutifully, politely, when I spoke to him, and who would answer, but clearly would rather have been eating the delicious thing he was waiting for. The way I was listening in on those around me. The annoying women behind us, who were so squeaky and loud, talking about the shallowest things. The men having lunch, one of them, the one with the shaved head, looking over at me a little too much.
My lunch guest was handsome and sweet, sunny and attentive. A little quiet for me (my lunch companions are usually un-shut-up-able, in the good sense) but beautiful to look at. So I ate, looked, and felt my pride rise and cover me like a warm heavy comforter.
So happy yesterday; Natty home and just bursting with his whispers and smiles. He seems so happy to be here, so happy to be. Oh, God, thank you. My own happiness felt like a sugar rush; a candy pink-colored indulgence. I knew I had to dance after dinner. I had to practice what we learned in Najmat’s class: abdominal posture and a new traveling step. But I was also in the mood to go free and wild, which meant veils.
These days what I love to do is mix and match a top and a skirt. This works really well because so many of my costumes are different shades of pink and lilac. Although it doesn’t look like a traditional Egyptian costume, it works because I bring all of it together by using accessories that match the top or the skirt. I chose my long, straight Safti skirt, which is just fuscia and silver, and a bedlah top with lots of fuscia, silver, and lilac beading and fringe. I wore one armband from the Safti outfit, to tie in with the skirt, and a gauntlet from a Pharaonics costume, which is made of sheer net and lots of pink and silver beading, so from a distance it looks like the beading is directly on your arm, like a tattoo.
I asked Ned to go to the car and get my first Natacha Atlas CD, because that stuff was pumping through my brain. Even though I’ve listened to it all ad nauseum, I am still obsessed with it. With Arabic music, just when you think you know what it’s going to do, it does something else, like a syncopated beat or a little trilling thing, or a very faint, deep male chanting like something out of the Aida tomb scene. It just fills my head and I see dark spaces with mosaic walls, silver candlesticks. Or I imagine dervishes, or Petite Jamilla, or Erzulie from the Middle East club doing paddle turns.
The abdominal posture is so difficult, but it is a joy, too. Naj taught me something I had never known before, in my three years of bellydance: you pull in at the lowest part of your belly, and then way up with the rest, also pulling in. This gives your belly that concave, S-shaped look that bellydancers have, like shifting sand dunes. I was ecstatic to see my profile looking like that, my multiple-birth-stretched torso looking smooth for moments at a time, when I had it right. It is one thing to stand in front of a mirror and do it. It is quite another to do dance moves and stay like that. But if you do, you achieve perfect isolations. That is how they all do it. The more absurdly lifted you can be, with the entire core pulled in and way up, the more your hips will look like they can just detach from you, just roll away on their own! (Now I practice this posture discreetly all the time, sucking in the lower belly, shoulders back, etc. Even on my bike.)
I put on “Ezzay” which has some Indian influences, and there’s a part near the beginning that sounds like parts of a Hebrew prayer. It fascinates me the way the Hebrew and the Arabic music and culture intersect and where they don’t. I get a taste of the exotically foreign and a sip of the comfortably familiar at the same time.
Ezzay just demands veil and spinning. It is very fast-paced, swelling, and orchestral in its sound. It swirls around you like a strong wind, so that you feel you have to turn and move quickly. Visualizing out-of-control wind helps me move correctly with the piece. And last night I found that I was not spotting at all, the way they teach you in ballet; instead, I was closing my eyes and spinning, just trying to remain upright and maintain my orientation. I would just spin and spin with my veil high, until the room would start to tip, and then I would stop, eyes closed, and try not to fall over. Ned thought it was funny, but the thing is, I was really beginning to get it. I was not sick at all, I only had a mild headache from it. What I’ve read about dervish spinning is that eventually your inner ear adjusts and you don’t even get dizzy. I actually felt some strange sensations that were kind of like being high.
I also tried paddle turning, and I figured that one out, at last. You stretch your arms out wide holding the veil in front of you. As you turn, you tilt one arm up with the other down, as if they were part of the same paddle. At the same time, you look over the shoulder that is going up, and then the other, so your head goes back and forth. You are paddling, turning, and moving your head all at once, and you try to go faster and faster, throwing your arms up then down so that the veil swirls in one direction, then the other, but also hugging your body.
I knew I had it right after awhile because it all felt automatic, and I was less and less in control of my spin. I was spinning around the room this way, and it was exhilarating. The loss of control while moving was so exciting, I just kept doing it. I was like a little kid again, spinning and spinning without worrying where it would lead. And I did not get sick!
Ned said it looked choppy, which annoyed me, but I knew I had gotten it right, and that over time it will smooth out, like one’s bellydance belly.
A man and a woman walked into a restaurant together. He was tall, thin, and blond. She was older, darker. Their faces seemed somewhat alike, with full red lips, well-defined chins and nicely shaped large noses. The man was a few feet in front, taking large steps into the dining room, apparently eager to be there. The woman was slower, looking around, taking in the dark woods, the high ceilings, and the white tablecloths. They sat down across from each other in a booth. The woman opened her menu and studied the offerings. The man left his closed, not as interested. A waiter came over to take their drink order, and the man ordered a Sprite, while his companion asked for some water.
They pored over their menus and after some discussion about types of pasta, sauces, and salads, they settled on two Caesar salads and a chicken parmagiana. The waiter brought their drinks, announced the specials before anyone could stop him, and then the woman ordered, checking with the man, who mumbled his choices. The waiter looked a little confused, and the woman briskly repeated what the man had said.
The man’s salad came first, and he started picking out the croutons and pulling off the shavings of cheese. The woman offered to take the cheese. He gave her all of the papery yellow slices, and then dumped the entire ramekin of dressing into the middle of his salad. He shoveled the gloppy lettuce into his mouth, occasionally picking pieces of cheese off his tongue. The waiter refilled the man’s soda and took away the other glass, which seemed to puzzle the man.
They sat in silence, while he ate. The woman gazed at the man’s face, with a smile on her own that was radiant. He rarely looked at her. Now and then the woman would ask something or mention this or that about nothing in particular. The man would always answer “Yes,” courteously, but he never said anything else but that.
At last the woman’s Caesar came, along with the chicken parm for the man. He immediately scraped off the cheese and the woman took it, and dripped a large wad of it into her mouth. The man cut the slab of flattened chicken into large pieces and chewed with gusto. The woman said that her salad was “so good,” and repeated this when the waiter came over.
When their meal was finished, the woman wondered if they should look at desserts, and the man agreed immediately. As the woman began reading the choices out loud, the man interrupted her and said, “Chocolate,” and that was decided. “A decaf and the brownie sundae,” the woman told the waiter.
The brownie sundae was a mountain of ice cream, cake, and hot fudge, in a fishbowl-sized glass. The man dug into it, allowing the woman one taste. She then had to satisfy herself with sweet coffee and with watching him greedily consume the dessert.
He stood up when he was finished, and seemed to want to leave. He picked up his empty glass and looked as if he wanted to bring it, presumably, to the sink. “No, darling, they will clean it up,” she said. “Sit down, I have to pay.”
He watched intently while she signed. There was never any question of who would pay. The woman was clearly in command of this particular aspect of the relationship.
They walked out, he in front of her, into the sparkling sunshine. They were both smiling. And no one in the restaurant was any the wiser.
Come climb with me, up the Metaphor Mountain.
Drink from a simile fountain
Where children are soda pop and sasparilla
and then they moult like a catepillar
Some people just bubble over you with their thoughts in a constant stream, fizzy, clear, and satisfying. Sprites. Others leak out drops here and there, almost always a surprise, but always worth contemplating. I know that I am in the first category, and Ned is in the second. It is funny to me to see where my children fall in the Thought Bubble Spectrum.
Benj, more and more, is a Bubbler. He seems to be springy, noisy, and full of music these days. Ever since the summer, I have noticed him morphing from prickly green catepillar (down to his perpetual camouflage pants and camouflage hat) into a butterfly. (This is funny to me, because right now his class is studying catepillars and butterlies. Ben revealed this to me the other day in typical Ben fashion, saying suddenly that he “hopes Cheesepuff will live.” But as usual, Eminently Wise Mommy proved a sham, and had to ask who the heck was Cheesepuff. Cheesepuff, it turned out, is the remaining catepillar in the classroom exhibit. No one knows what happened to the other two. Mr. C asked the kids to describe the situation, and Ben’s theory was that Cheesepuff ate them. He reasoned that Cheesepuff was “constepated” from his feast and was, therefore, not moving. He then drew a comic illustrating the whole drama.)
Ben is happy, (knock wood), and there is no doubt about it. The more obvious changes are that he doesn’t hate school, he is no longer rude to adults, he is flexible, he does his homework dutifully and well, and he actually goes outdoors during recess and on some playdates.
Less obvious yet absolutely clear to a Discerning Mother’s eye is the way he seems to float. He bounces, literally, from the stairs onto the floor every morning. He does flips onto the livingroom couch. He climbs up the doorjambs. He is happy.
Why? I have my theories, complicated and tangled. I don’t dare to write them. Who really knows why their children improve and leave their husks and fly? Sometimes we just have to sit back and watch.
I guess I would say it was a successful weekend. Funny that I have to think that way, as if my days are one big checklist of tasks and goals. My life’s IEP. Here’s what it would look like, if I had one:
Description of student: “Susan is a fairly bright, pleasant person with a strong sense of justice and aesthetics. Strengths are in parenting, writing, physical activity, and an ability to cut through the “bullshit.” Weak points are in modulating her emotions, organization, self-anesthetizing through food and other undesirables, and obsessing.”
Long-term goals, or where would you like to see the student 5 years from now? “Susan should be more adept at managing mood swings, creating and maintaining structures that help her stay organized, utilizing healthy outlets for tolerating difficult feelings. She will have let two of her sons grow up and move out of the house, while guiding the youngest towards same. She should be utilizing her writing ability to earn more money and continue the perspicacity, running, bellydancing, and cycling without popping knees or wrenching hips. A haircut would be nice.”
How will you effect those goals?
1) Organization a): Get Mr. Ned to go to Staples and pick out adequate binders, paper clips, highlighters, pens, etc., for teaching job. Use said binders 80% of the time.
Organization b): Purchase only one more amazing costume for dancing in. Try to sell other ill-fitting cossies on E-bay or Bhuz.
2) Moods, emotional a): Stay in touch with whatever doctors or professionals or friends or family members help with the mood thing. Call people back 80% of the time, check e-mail 80% less.
Moods, b): Attend Najmat’s class regularly for maintenance of belly, mood, and confidence.
3) Physical Maintenance: Do leg weights three times a week to strengthen areas around knees. Stretch before and after dance, riding, running.
4) Children and love: a) Continue to bring Nat home Fridays and return him to House at designated date, crying only half of the way home, 80% of the time.
b) Praise and encourage Max and Ben to do things with Nat, such as baking.
c) Let Max move his room to the third floor
d) Get Ben piano lessons, continue the swim classes
e) Let Ned talk at least 20% of the time.
I accept the plan and placement as presented.__________________________________
What is going on right now:
1) Thinking about 9/11 and one of the best books written on the topic, Extremely Loud and Incredibly Close, Jonathan Saffron Foeur. I can’t believe that really happened. And they took off from here. God help us all.
2) Reading Getting Rid of Matthew, by Jane Fallon. So-so so far.
3 Glowing from the way my class went today. Such earnest, hard-working students, bright and friendly. I brought them Dunkin’ Munchkins for the midpoint break (why not? class is right during lunch and I’ll just bet a bunch of them haven’t eaten a thing, and this way I get more out of them.) I can’t believe how much I love teaching essay-writing. It is something I know intuitively and can do in my sleep; but teaching it, explicitly breaking down the components, is new, challenging, and exciting.
4) Finished interviewing another autism parent, and got a lot of good material. It is very hard asking the questions I need to ask because they don’t really know me, and may find it hard to talk about difficult emotional things (unlike some people!)
5) I just adore the turquoise blue lace top I bought this summer at Karol Richardson in Orleans, and it was the perfect temperature today to wear it.
6) I had to walk to school to pick up Benj because Ned took my car (I really enjoyed it, because I ran into all sorts of school friends of mine who usually walk to school. I drive, because I’m a Primadonna). The Squirtle is officially in extremis, nearly dead. He has 148,000 miles on him, a cat-shaped mark on the passenger door (from you-know-who) and now is growling because his muffler is falling off. But he’s not scary, because: he’s only a Squirtle 1994 Civic! So — Ned is buying a new car tonight! A Civic Hybrid. As he put it, “I want to be the change I want to see in the world.” My sweet, idealistic darling.
7) I am surviving a detoxification. Very little caffeine, no sugar, only a tiny bit of of Splenda. I actually feel good!
8) Ben is happy most of the time, knock on wood infinitely
9) I made a new calendar for Nat so that he would never be confused again about where he sleeps and when.
10) It is my former therapist’s birthday, which gives me something good to remember about 9/11. She pretty much saved my life; I started seeing her when Nat was 2, so… I called her today to tell her I loved her, and thanks.
Thank you, Guy Rude, for sending me this absolutely wonderful story, of a dad and his autistic son lost at sea. (Don’t worry, Dad! They make it! ) Read to the end about how Christopher helped calm his dad. Oh, man, Ned and I laughed and cried at the same time. Enjoy!
Dipping myself into the shallow end of the pond today. I throw off the leaden shackles of despair because things are 180 degrees improved with the House communication. Natty makes the calls and we have… a conversation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Which I, finally, end because….I am out of stuff to ask!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He says “Good bye”!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! A kid who could not answer yes or no at 4.
Development, good school program, lots of love, air and water and sunlight and THEY GROW AND IMPROVE. Forget the actual diagnosis. It’s only a word.
I kick the soapbox out from under my feet and continue:
Ned’s working from home, it is sunny enough for a run or ride, my class went well yesterday, Nat was okay on the phone. The fragile balance holds, ever important to a Libra.
So my light thoughts turn to TCBB: Taking Care of Business, Babe. School newsletter. Autism Book 2 interviews. Keep Beastie bouncy. Get Max to grunt a little about his day. Quality time with Ned. Bike to repair shop (Mr. Y has a sudden and mysterious flat tire, oh the betrayal!) Getting my new computer, with the educator’s discount(!) (Precious only has 9 letters on her keyboard. Her lid cannot shut. She is slow and creaky. But she is like an old friend. She helped me write MPWA and Dirt: A Story of Gardening, Mothering, and Midlife Crisis. How can I junk her?
Oh, but I can. I am going to have to upgrade because, well, it’s time.) And if I sell Dirt — which is at the fourth editor now, the first three having declined — I will get the upgraded MacBook modded cotton candy pink (thanks for the suggestion, Max!)
I have been able to untangle some of my sadness. I think that it is impossible for me not to project some of my own imaginings and feelings onto Nat, who does not tell me a whole lot about his state of mind. I have always had to feel and to guess, and also to ask and to listen.
So I think that I am sad about Nat being gone and about not seeing him daily. It is still so new. I am sad because I just plain old miss him. I’m sad that he is going through a transition and probably does not understand a lot of it. I am sad because I had not been hearing from him or about him as much as I needed and wanted to.
So Ned and I figured out a strategy. We need more daily communication. We need email lists of what and how Nat has been doing, both emotionally and regarding his IEP. We need to know that he is getting consistent, thorough care. And he is, but I want the specifics. I may be micromanaging, so sue me.
This morning I emailed the staff with a list of specifics, what I wanted and what I did not want. Ned talked to the House director last night, with much of the same. I talked to Nat’s teacher today and vented for a long time. She let me cry and whine and she listened better than a therapist. She also had a lot of information for me, such as how the Houses work and how to improve communication between Houses and the families. She totally gets Nat, and she is just an incredible human being, God bless her, and thank God she chose this field.
So Natty Darling called me tonight, saying, “Hi who’s this?” which is kind of how he’s learned how to talk on the phone.
“Hi Darling! It’s Mommy!”
Then he gave me a whole list of what he did today, school and House, down to helping make dinner and vacuuming. He just always always does what he can. And I told him that he was coming home for Friday night and starting his favorite social group, the one with the local kids, and on Sunday: Red Sox game with his other social group!
And so, tonight, after taking in all of your thoughts and love, and lying with my head in Ned’s lap, talking to Mom, Dad, and Laura, kissing Max’s hair and helping Ben think of a Halloween costume, and then taking Lisa’s advice and having a lot of chocolate, I am feeling pretty good, my hope and my fat belly safely restored.
I ask my God who gives us light
What is wrong and what is right
What to do about Baby Delight
Keep him there beyond my sight
Or bring him back and hold him tight
Is he learning more, day and night —
Will it make his future more bright?
Or is it kind of a lie that’s white
Though guilt may claw and grief does bite
But here or there — let go or fight?
I’m sad about Natty. I can’t help it. I am so afraid our bond will grow weaker without daily contact. I miss him so much, even if we don’t talk or do anything of substance together. Even if he just sits on the couch and seems not to notice me. The point is, I notice him! And I feel our connection, even if he is quiet.
But I feel it less with him not being here. That breaks my heart. Talking on the phone and visiting there is unsatisfying. It is artificial. It is not what we’ve always done. I keep seeing him, imagining him, and then realizing he is not here and what does that mean? How did that happen, that now this is the thing we do? Just like when I first sent him to school.
When he was little and he first had to go to school, I felt kind of the same way. I felt like I was betraying him by sending him off to school, rather than just keeping him here with me. I felt like because I was sending him to a special needs program, it was making it more true that he had a disability, and that made me so sad. I felt so sorry for him, having a disability. I felt guilty. I felt responsible, because I brought him into this world, and shouldn’t I have seen to it that he had all he needed to live in it safely and happily?
Gradually I got over it. I got used to it. He grew into being a student. I got used to not having him here in the mornings. I could spend time with my baby Max. I didn’t have to think about what I should have been doing about the autism. I am so sorry to offend people with autism when I say things like that, but speaking as a mother who really wants everything for her kid, I needed to mitigate the autism, or the things that went along with it, like language impairment and sensory defensiveness and aggressive behavior.
So now he has to go and live apart from us to be with specialists around the clock, to help him make up for some of his deficits. It feels a little like he is being punished for being autistic. He doesn’t get to live here because he has to overcome and compensate just to survive out there.
And the thing is, he has that disability because of something physiological that didn’t connect quite right while I was carrying him around inside. That is why I am feeling responsible.
I’m so sorry to bum you all out, you other parents who are trying so hard to find hope and get beyond grief and guilt. I feel like I’m supposed to be some kind of role model or something, because I have been there, or been through it. But I’m really not. I’m not finished yet with him in this way. I want him back. I don’t want him to get used to it, because then there will be less to our connection together. Today on the phone he called the House “home.” That made me want to cry, yet when I told people I tried to be happy because I knew they thought it was a good thing.
I’m trying so hard not to be so ugly and wallow-ish, but the suffocating humid, gray day just got to me. Don’t tell me to snap out of it. Don’t tell me I’m being selfish. I’ll just delete you. I’ve got to say this. I’ve been carrying around this lump of disgusting emotion in my throat and belly, and I’ve just got to vomit it out onto this screen.
I want him back. It is too soon to let him go. It feels like another betrayal.
Yesterday we all felt so good from our day that we went out to dinner to celebrate. I picked the Cheesecake Factory, because it is the best of the chain, kid-friendly restaurants: you can actually fool yourself into believing that you are in a real restaurant. You can get a pretty nice glass of wine, beautiful salads, and there is really nothing tacky to detract or distract.
What detracted for me was the smoothness. The simplicity of us. The family as a foursome; a non-special-needs foursome. How easy, how strangely easy. For while I was filled with a lovely, creamy happiness and sense of accomplishment from my first day on the job, basking in the nachas of Ben’s (mostly) great first day, proud of Max for going on an 11 1/2 mile bike ride on his last day of freedom, and happy for Ned having attracted the notice of one of his heroes (this is a terrible run-on sentence that I would never allow my students to create), …
…I thought of Nat.
Sometimes it feels suddenly like we are pretending we don’t have a fifth person as a part of us. That there is just no way to feel complete, for it to be supremely perfect, because even when I’m not thinking about him, I’m suddenly thinking about him. I’m afraid of my happiness because it makes me feel disloyal sometimes, when I realize that I am no longer sad about Nat.
I guess I just miss him, and I don’t know how I’m supposed to deal with the moments when I’ve realized that I wasn’t thinking about him.
…And this is a young man who, when he was three, only twirled string in the light beams and only repeated what we said to him. To all you young parents out there: never give up!!!!
Today: September 3, 2008
Programs: E-mail, Answering phone, Chapter reading, reading comp, document reading, sightwords, respond to questions, conversation, pronouns, table top transaction, math, safety skill, wallet
Vocational: Mail Delivery, Fold Shirt, Deliver message, Stock Shelves, Follow Directions, Photocopy, Assembly
Leisure: Lots of books (he kept picking them whenever we gave him the free choice), floor puzzle, music, computer
Special: Playground (Annie was on vacation so we didn’t have music- but he did great with our schedule being slightly different due to her vacation)
Lunch: School lunch today was Mac and Cheese. He threw it away so we made him Ravioli instead. He ate that and the fruit cup.
We started Nat on a new stimulus set for sightwords, they deal with the playground and various activities he can do while outside. He has completed the first chapter of his book and will move on once he completes his comprehension questions. For his conversations we have taken ourselves (the teachers) out of it and have some of his peers ask him questions like what special he had and whether he had fun while he was there and having Nat respond with the correct answer. I hope that eventually he will not only ask questions back, but with all of this spontaneous conversation we are all seeing this might help him gear some of it towards his friends. –Therese
Growth and development are a mysterious and wonderful thing. Some things shoot right up. Others do not reach fruition until much later. Still others start going one way and find themselves starved for nourishment or light; whether they change their paths or not is the challenge for them.
I peaked early (married at 21, right out of college; first two children by age 29, old autism mom by 35). Then again, I am blooming very late. I will be starting a new job tomorrow, as an adjunct prof teaching English Comp. at a nearby university. I spent most of yesterday organizing and making notes. I took B with me to Staples and picked out all the wrong stuff. Organization material is not my strong point; I am much more of a write-it-on-the-back-of-an-envelope -and-stick-it-in-my-bag (but the bag must be gloriously gorgeous). So I bought two kinds of binders, and neither one is quite right. I sat there cutting up all these plastic dividers and punching new holes in them to make it all work, but nothing did. But doing so showed me what I really do need: lots and lots of pocket separator thingies. Or maybe a bigger bag?
I met with the director and the department chair and others last week, all very kind and helpful. The director of the program made a lot of template assignments and outlines so that there is a really clear path to follow, and yet he encourages adjuncts to be as creative as they want to be, as long as they hit the four requirements. I am going to be teaching three different kinds of essay, and so I am beyond excited. As you are probably aware, essays are my cup of coffee (I hate tea). (Ned tells me I have around 100 essay-type articles on my website now, and of course, so much more churning around in my feverish head.)
While downtown, I also got a feel for the campus, which is lovely. It is in one of my favorite parts of Boston: brick-lined narrow streets, old row houses, lots of hills, the State House. I can take the T there and be at work in 20 minutes.
The best part of this job is the job. I can’t believe I get to teach at a university. This is what I came to Boston for, 23 years ago, fresh out of graduate school. But back then I thought I was going to teach history, and I could not get a job anywhere. Little did I know I was a writer, not a historian. Thank God Ned said, “You want to write? Just write.” Then I found my way, followed my heart, and here I am. I guess it’s really a matter of finding the perfect topic. And the right bag.
Here is a snapshot of how I think:
I was thinking about Nat around 9 a.m., just when he was beginning his day at school. I was roaming the aisles of the Stop & Shop, feeling blue as I considered whether to buy kidney beans — his favorite lunch — or not, because, well, he was hardly ever home anymore, and, and, and… 🙁
I thought suddenly about how my dear cousin had told me how much he missed his mom, who had died, and with whom he had had a very troubled relationship. It was his belief that — because he did not know what he had actually missed with her by not being close — his grief was all the more acute. Sometimes I think that because I almost never really have long or meaningful conversations with Nat, that when he leaves, I feel like I “miss” him all the more…oh, autism! Autism!
–Wait a minute! Is that true, or am I just being Mrs. Mel O. Drama?
Conversation with Nat is very limited in words, but what that does is it forces me to sharpen all of my other senses when I’m around him, the way they say a blind person can hear better for lack of vision. So when I’m talking to Nat, I’m looking closely at him, traveling his face with my eyes, breathing in his scent of laundry and skin, and listening, listening, listening to discern words from the quiet and the jumble of his speech. It’s never as satisfying as a conversation with Max about just what it is that Libertarians believe, or Ben, where I learn things like his strange misconceptions of sex or his perpetual debate about just what kind of animal Chowder is?
It’s not satisfying that way, but I do learn about what is important to Nat. And I have to say that I may never have laughed as hard as I did recently when I figured out that when Nat goes around saying, “Pee-is,” and, “Heee-pee-is,” laughing and laughing, he is cracking himself up over that most infamous part of the male anatomy! Body humor developmental phase, check!
Last night I was straightening the many papers and flyers that cover the coffee table –as my elegant, wise grandmother who was a Pisces used to say, “you shouldn’t know from it” — and he sat down right next to me on the couch and I asked him if he wanted to watch a video. He said, “No video.” He looked meaningfully at the flyer that was in my hand — the Social Group flyer — and I guess I read his mind. “Oh, you want me to read this?” I asked.
“Yes,” he said. So I read the flyer for all the upcoming activities as if it were a story, and he listened, mesmerized. When I was done I asked if he wanted to hear it again. He said, “Mommy will go away.” He got up and picked up a video.
“Okay, Nat. You watching a movie now?”
To quote my late Grandma, the big fat squooshy one who was a Taurus, “I just love him so much, I don’t know why!”
When of course, it is so obvious.
Sparkling clean color, the sky
like glass blown thin and brittle
The earth has turned, ever so slightly
away from me