Last Wednesday I had my first bellydance class of the year, with a new teacher (of course!). I am like a bellydance sharq, I have to keep moving forward, devouring whatever I can find. This puts me at a bit of a disadvantage in my classes, because when you start with a new teacher, you go back to being a beginner. It is hard for me to do anything without comparing myself (usually unfavorably) to others, and so of course I was noticing how the rest of them really looked great and knew what to do.
I have to keep my eye on what matters, and in this case, that is especially true, because this teacher is very into turning. To execute a proper turn, you have to know how to spot, i.e., you pick out a spot in the distance and you don’t tear your eyes away from it until your turn forces you to at last turn your head. It is a very beautiful and graceful action, and I learned it in ballet but in bellydance you are doing this while counting beats and ending with an accent move like a hip drop.
It didn’t matter that I knew about turning; I got very dizzy and discouraged anyway. I suddenly did not understand what was meant by a 3-point turn vs. a 4-point. Then, when we were finally finished with going across the studio turning and turning, she told us to get out our veils.
We learned a pivot turn, or a paddle turn, done while raising your arms in a V, holding the veil. This makes a rose-petal like shape with your head in the center, as you pivot in one spot. Watching the more experienced women do it was just heart-stopping, especially this one woman with dark black hair and a dark green veil.
I just finished practicing it all tonight and I now understand the different turns. I did many and did not get dizzy too often. The pivot turn-with-veil came out lovely. In the end, I was doing it pretty fast, which whips the veil up high and tight. I was all in pale pink and silver. I had a few new songs by the Egyptian pop star Hakim, stuff I’d heard at the Middle East, so I felt happy and very up for the whole 40 minute workout.
I love the way each teacher emphasizes different parts of the dance. And yet, keep going from teacher to teacher, and you still will never learn it all. Katia loves turns and veils. Amira Jamal loves hips and feet with zills. Melinda loves isolations and combinations. Shadia loves details in arms, hands, and middle. Lolisha loves veil and hands. Deanna loves choreography. Sabrina loves zills and combinations and floorwork. Najmat loves cane and drilling traveling steps and hips (but I only took one class with her so far).
I feast on bellydance. I hope I will never be full.
My novel is done. I have completed a very good draft, and I love, love, love it. I provided a sister for Eric, the main male character, and a mom for Emmy, the main character. All the characters are fuller than before, which is what my agent suggested. I have put in little Dan’s thoughts, per Laura’s suggestion, and I cleaned up the romance confusion, per my friend Lori’s. There is sex, but don’t get too excited; it is for a purpose, it is part of the plot. I also have made sure that each of Emmy’s sons (Nick, who is autistic; Henry, who is troubled; and Dan, who is angry, to sum them up superficially) grow. There is also lots of gardening and lots and lots of dialog that sounds, to me, like the real thing.
I now I move on to Phase II: I printed it out (with our wonderful new printer from HP, House of Perks). Ned reads it on paper and I take it, a section at a time, to the gym, where I cannot edit it, and I see if it holds my attention. Every line must be my best. I feel about this one the way I felt about Making Peace, before it was Making Peace (it was called Just a Family until the marketing team from Shambhala messed with it). Right now I think it is excellent, but I have to get my feedback.
Several friends are also reading this newest version, or close to it, and I’ll see what they think. After Phase II, reading it on paper, I make whatever final changes and edits, but as of today I am finished adding content. It is about 80,000 words, close to 300 pages.
After the final changes and edits, I move on to Phase III: sending it to my agent. And then, we shall see if Dirt has legs.
A little song, a little dance
A little seltzer in your pants.
–The late Chuckles the Clown
I was just nominated for my first blogging award! NancyBea has picked me as a “Thinking Blogger.” I will confess, there are times when I really do think as I write this blog. But not
always. My other writing is a combination of material fresh from the heart, channeled through my mind, like wine set to age in an oaken barrel. (That’s not to say I am wooden-headed.) But my blog is mostly blood-fed, just from the heart and not censored or edited very much. I write it for me, and I hope, for you. I hope it helps, rather than hurts. I am a true believer in Tikkun Olam, a Jewish phrase for “Healing the World.” It is up to every single person to find their own special, unique way that they make things a little better, rather than worse. Being a Lazy Libra, I do what comes easiest: sit on my ass and write stuff that is honest, true, and hopefully funny.
I would nominate Neddy Sweets’ Blog. He is one of the biggest thinkers I know. Intellectual sparring is our foreplay. Or one form, anyway. Ah, the life of the mind…
A snail is inching along a person’s front walk. The guy bends down and picks him up and throws him across the street.
A year later, the snail comes up to the guy and says, “What was that all about?”
I went down to the basement to throw something in the recycle box and I stepped right into a puddle. “What the…?” I asked out loud. I heard that awful sound, the rush of water coming from a place it ought not to be: the little weird toilet down there. “Oh no!” I yelled, and panicked, looking crazily for the water turn-off. That basement is an intestinal-like nightmare of pipes and faucets; it almost feels like if you turn the wrong one you will explode something.
“Ned, help!” I thought. His cell was not working. His office phone went right to voice mail. His I.M. was red. He doesn’t check personal email at work. I didn’t have anyone else’s phone number at H.P. My heart was pounding, my ears were filled with the sound of wrongful water. I slammed my hand on the table and went downstairs to look at it again, stepping gingerly through the dark gray murky wetness.
I started to cry. I was wearing a pretty skirt. I wanted to start dinner. I was hot and tired. I had a reading to go to at the Brookline Booksmith.
Ben and Max came down with me. “What do I do, what do I do?” I moaned.
“I can try to find the turn-off,” Max offered. Darling.
Then Ben (BEN!) said, “I’ll help you.” My heart just flopped over. More weeping.
I called all the right people. Within an hour I had a plumber, who took one look and said, “Nope, it’s the drain that backed up. Call a drain guy. That will be $99.” Then I had the clean-up crew come and suck it all out of there, and disinfect it, too. Then the pizza guy came and we ate while the drain guy snaked it out. But eventually we are going to have to bulldoze the front lawn and get rid of the 4 foot wide clay pipes that are disintegrating. That will cost a bit, no doubt.
I felt very — well, drained.
I was able to make it to most of John Elder Robison’s reading. I loved it. He is charming and funny, and does a great job presenting how life looks to him. The room was packed. I asked him a question and he said, “That you, Susan?” Which was cool.
While standing in line to get my book and audio signed a very thin tall young man came up to the woman in front of me and said very slowly, “They said he can’t sign an audio tape.” I realized this young man reminded me a great deal of Nat, except he could talk more. I said, “Oh, he can sign it; just take off the plastic wrapping.” The young man introduced himself as Daniel (eventually) and seemed very pleased to be talking to me, even though it was a little hard for him to talk. I fought to keep my floppy heart steady.
I went outside and Daniel was standing there. I asked him who he was there with. “I came by myself.” It turns out he came in a taxi. I felt bad for him. I think he wanted to be with me some more, and he didn’t want to take a taxi. I offered him a ride, but then I got nervous. It didn’t seem quite right somehow.
Out walks this bouncy old woman who marches up to us and introduces herself as “Grandma Dottie.” Dottie has a grandson Daniel’s age, who has Asperger’s. She saw right away what we were talking about and offered to drive us both where we had to go (Daniel, home; me, to my car in the lot). We got in and the aptly-named Dottie drove off.
Dottie was not from around here so she had no idea where to go. Daniel had a very hard time getting words out. So I realized it was kind of up to me to get us to Daniel’s apartment in Brighton. Directionally-challenged me. So I concentrated really hard to figure out where to go. Now and then, Daniel would interject a direction, moments after we had passed the street. Now and then, Dottie would nearly get us killed with her stop-and-start, left-turn-on-red style of driving. Now and then I would take a deep breath and think, “It’s going to be okay.”
We all eventually got to where we had to be. I was grateful to Dottie, and wanted to hug her, even though she is not my grandma. She so easily could have been. I also was tearfully proud of Daniel for being so brave and independent, even though he is not my son. He could have been.
I got into my car and I said out loud to God, “So what was that all about?”
The Boston Globe has gotten stupid all over me. They may be recharging their old campaign to disembowel special education in Massachusetts. A few years ago Kate Zernike wrote a series of alleged investigative articles to determine the feasibility of Maximum Feasible Benefit, the lynchpin of Chapter 766 (which is the Massachusetts special education law, in addition to the federal IDEA). MFB lost in the State House; Thomas Finneran led that charge as the then “Speaker for Life,” which, like the “Thousand Year Reich,” only lasted a few years, thank God. Finneran was later investigated under allegations of gerrymandering, which did not actually stick, and he went on to a cushy job in the private sector. Anyway, because of people like Ms. Zernike and Mr. Finneran, and many spineless representatives and senators, (the kind with the lower case “s”) it was decided that kids with special needs did not need to be educated to their maximum potential, but rather, to the much lower national standard of “Free and Appropriate Education,” FAPE. and so thousands of kids in Massachusetts found it even harder to get any kind of education at all, let alone anything near their potential.
But that was only the beginning. Since the loss of MFB, this state has cut education funding over and over, so that now towns and cities are doing things like closing schools, cutting athletics and the arts, cutting down on staff and overcrowding classes, and letting physical repair lag. But we say we value children.
So the Globe and others have decided to take another look at what expenses they may cut, rather than doing with really needs to be done: raise taxes at the state level and give it back to the schools and towns. Oh, and while we’re at it, let’s make sure we don’t have any more fatal cave-ins on any of our major roads, like what happened in that tunnel on 93. Their solution is to target the most vulnerable children in the population: kids who, like Nat, have private transportation to their school programs.
YOU SUGGEST that the new school superintendent, Carol Johnson, take a good look at some of the special education students who receive door-to-door transportation to school programs, with the idea that cutting down on this will save millions. A careful eye in a superintendent is always a good thing; but how effective are the solutions proposed by the Globe?
Will school systems save money if they have to train monitors to really be able to handle what they will come up against? The issue here is not only whether students can find their way to a bus stop; there are problems with behavior – in special- and regular-ed students – that one questionably trained bus monitor may not be able to manage.
What’s more, the insinuation that door-to-door service has become a “salve” for the parents of special-ed students implies that we are somehow wounded by our children’s challenges. Rather, it is articles like yours, which suggest that we are miserable and grasping, that hurt and offend.
Take dat, you bastads, as my grandmother would say.
These are the days of miracle and wonder.
Is happiness the absence of pain, or is it something more pure and grand? I think it’s both. I love the pleasure that is felt right after a release from pain. Something as simple as no more illness, nausea gone at last. Or a worry that turns out to be nothing. Or the resolution of a problem in a relationship. A child becoming less of a mystery. Turning a corner.
We saw B’s therapist today and it was a really fruitful session. We came up with some really good ideas and strategies for helping B deal with his complex feelings about Nat. I told her how B and I have a real bond over the LOLcats. She said, “Why don’t you visit animal shelters together?!” I got all excited; what a great idea! We would take pictures of cats and make our own captions. I loved going to the MSPCA before I had kids. But I knew if I went there I would want to get a pet. And then it rose up in me, like hunger: I wanted a cat. I was going to get a cat. And I stayed in a dreamy kitten-induced haze all day because of it.
I also realized tonight that Nat has broken through the sac that encased him all summer, where he couldn’t see anything but the need to control everything. Tonight, as Ned bugged him to brush his teeth, and not wait so passively for us to tell him, I pointed out how we have moved up one level of worry from the summer’s pit of despair. No longer worried much about aggression and tantrums around other people’s routines, we now focus (blissfully) on getting Nat to be less passive about his own routines. Ned smiled at me when he realized it was true; we have been breathing easier since the fall set in with its routines and its “complicated air,” as my poet friend Melinda said.
But sometimes happiness is just a huge bubble of joyful stuff in concordance; a constellation of good events shining forth at once, and you happen to be aware of it. Sometimes it hits me, while I’m sitting on the porch, Precious is open and brimming with wit; I am warm and drowsy. A fresh cup of coffee waits on the end table. Maybe a boy is sitting out there with me, or nearby; some beautiful person that actually came from that great love, from Ned and me. The air is complicated, but my heart is easy. And I think, “yes, that’s it.” Sometimes I even remember to thank God.
To Get A Cat
Companion for the boys
Instead of a baby
Boys will get over their animal fears
Something for us all to laugh at — good bond
Have to take Allegra around the clock
Have to buy an air purifier
Attacking feet at night
What to do on vacations
I just got back from a long bike ride around the Charles and Boston, with my friend Lisa. I have never ridden along the Charles, because the one time I tried, crossing Comm Ave and the T tracks was way too scary. But Lisa lives in Boston, so I drove there with my bike and we rode from her house. It was fairly easy; even riding along Storrow Drive was okay. Probably everything worked out so well because it’s Sunday and we left early.
We rode along the Charles and the Esplanade, a beautiful park with small ponds cutting through it and footbridges. All of it sparkled with perfect sunshine. Then crossed the footbridge into Beacon Hill and onto Arlington and Newbury Sts. until we found an outdoor cafe in the sun. There we had brunch; we shared a plate of cinnamon challah french toast, in honor of the Jewish new year (and because I am no longer doing low carb; just low-ish carb, no fat, and tons of exercise.) We caught up on all of our stuff from July and August, and talked about my upcoming birthday costume party, and what we were wearing, (you only get one guess of what I’m going as) and the Boston Bellydance scene, of which we are both a part (or at least belly groupies).
I got back around 11:30 to a harried Ned, who was annoyed because Nat was jumpy today (probably because I took the car on a bike ride and that made no sense to him) and tried to scratch him. I felt like I shouldn’t have been gone so long, because Ned was so grouchy Now Nat seems fine, if a little hyper.
I have a headache all the way to the back of my throat so it’s nap time. When I wake up I’ll plant bulbs or bake. Sticking close to home from now on. Except Tuesday, when our dear, hilarious college friend is coming to town and we are taking him out to dinner, without the boys. Too bad there’s no bellydancing on Tuesdays.
Tonight is the beginning of Yom Kippur, the Day of Atonement for Jews. We had a lovely dinner, just the five of us, with Nat leading us in prayer. L’Shana Tovah! … See my Tabblo>
Here is something a reader sent me, that we both thought was an interesting point of debate:
“…the last 20 minutes of Oprah the other day when Jenny McCarthy and Holly Robinson Peete were on discussing their children with autism. Holly Robinson Peete made a specific point of saying that saying your child was ‘autistic’ was offensive…they ‘have autism.’”
I feel like although I truly understand Ms. Robinson Peete wanting to have control over how people talk about her child, I disagree. Maybe she herself wants to titrate the label down to perfect accuracy so that people truly understand about her son. I can’t blame her for that.
And yet, I don’t think she is right that the term “autistic” is offensive. I think that kind of slur will occur later, when more people are aware of autism, like what has happened with the term “mental retardation.”
This cultural difference is why saying “autistic” is not offensive. I also believe offense has to do with intent. I don’t believe it actually always matters what you call someone, it’s how you call someone. Or why. If your intent is to single out and put down, or characterize someone by just that one label, then I might be annoyed. Sometimes it matters. It depends on the context and the cultural view of the concept.
I know that in this forum I have made the point that calling someone “A Retard” is offensive, and that is because you are making cognitive disability, a.k.a mental retardation, into an insult by your tone and intent. Mental retardation is not an insult, although I certainly ran away from the concept as Nat was growing up. But that again was not because there is something inherently bad about MR; it was because of how others treat you as just this one thing, and perhaps dismiss or marginalize you. It is offensive if by calling someone that you are limiting their potential, cutting off possibilities.
These days you might hear me say, “Nat tests at a retarded level.” I may have even said, “Nat tests retarded.” This usage is shorthand for discussing Nat’s test scores, which have now become important as we immerse ourselves into the murky swamp of Adult Services with the Department of — yes, that’s right — Mental Retardation. I don’t think you would ever hear me say, “Nat is retarded,” and you would never hear me say that someone is “A Retard,” because that has become pejorative. That word, “retarded,” has come to have a stigmatizing meaning, because of all the people who use it to put down someone else. (As in when “Heyah in Massachusetts we don’t drive in that retahd mode,” was shouted angrily at my brother-in-law once on the Mass Pike.) No, I don’t think people are yet using “autistic” to insult another person. Although I do find myself thinking, “stupid Neurotypicals,” when I see how difficult the world has made something for Nat.
It’s also about your own comfort level with the concepts. Some people are uncomfortable with the Jewish thing, and they cannot bring themselves to say, “Jews.” Instead, they say, “Jewish people,” or the strange, “those of the Jewish Persuasion.” How about “Jewish Blood?” What, does my blood taste more like bagels or something? Does it look blue and white, like the flag of Israel? No, it is the same Christmas red as anyone else’s. So I don’t get it. But if Ms. Robinson Peete has her way, maybe people will be afraid to say anybody is anything. Which reminds me of an interesting example. I know an autistic young man who can’t bear for anyone to say to him, “You’re not…” One inaccurate designation will ruin S’s entire day.
What’s next? Soon people will start to say, “Those who have Judaism,” rather than “Those who are Jewish.” Dayenu.
Habibi, ya nour el ain
My darling, glow in my eyes
Habibi (Click it and get your sound on and your mind open. This one will make you get up and dance.) is one of my secret nicknames for Ben, whose initials are “BB.” It sounds like BB and it means “beloved” in Arabic. I would never, ever tell him this because he hates all things sentimental, or pretends and acts very consistently that he does, so either way I can’t. I suspect it is kind of an act. I sang some of it today and he said, “Mom, don’t you know that there are like one million people in the world who hate that song?”
I said, “Really? One million?”
“Well, at least one.” Beast!
I think Ben needs to feel tough because he’s the youngest by far in this family and because he is just “average” size for his age. His brothers were always among the tallest in their classes. Where does Ben’s smallness come from? I guess Ned’s mom is short and my sister is “petite,” which to me means “small-boned and below 5’3″. So there is some precedent.
I have been very sensitive to B’s changes because I see now that all three of my boys are really, truly growing up. There is less and less of me that they need. And I just kind of fill up and overflow and then I don’t know what to do with it. These days it goes into my running and my writing. But I never thought this time in my life would really come. Nat is a moody, distant teenager. Max is a moody, distant teenager. Ben is a busy, vivacious nine-year-old. No one wants to do anything with Ned and me anymore. Not even bake. I cried on Sunday when Nat refused to bake with me, and then he relented. So he’s a good Jewish boy, who responds well to guilt trips!
But seriously, I am working hard on the concept of Letting Go, but it is one that has so far eluded me. I still think about my best friend from high school and how I would love to see her again. I still think about my first real boyfriend, when I was 13 and he was 16, a Cape Cod romance. I still remember boyish Ned, as if it were yesterday. And my babies…! They were the cutest little boys imaginable. When I see new babies these days, I just get all shaky. I can’t believe how exquisite they are, and how much more I appreciate their loveliness, now that I’m — well — not in the market anymore. (Really it’s Ned who is not. I’d have another in a second. Or so I think.)
Yesterday B came in my room while I was reading and he said, “So Mom, when I go off to college, what’s going to happen to all the Legos on my floor?” His voice broke on the word “floor.” He looked down, so that I could not see all the emotion in his face.
“Well, Benj,” I said (OH LITTLE B, LET ME KISS YOU, I thought), “I suppose I’ll just keep them in their drawers or out on the floor for when you come home on visits, right? Why would I do anything with them?” Why indeed? Who needs a floor, anyway?
He dashed from my room, saying, “Yup.” All better.
I still cling to it like a leech, as Bruce Springsteen would say.
I am thinking about my birthday a month early for some reason (it’s just there, in my head), and what I want to do for it. Maybe because it is cold down here in the diningroom for the first time all season, and it’s crisply blue outside. The colors are like stained glass, so sharp and sparkly. Fall light. It’s early, and yet, I have to make the plan.
I think I figured it out: a costume party! My birthday (October 18) is close enough to Halloween that it is the right season. That would be my present: to see all my friends dressed up in costume. Another wish: that my friends who moved to Florida would be here for it, you know who you are.
We could cater it with all kinds of spooky foods and decorate of course in some manner that would please me and create an atmosphere. I’d probably do Casbah meets 1313 Mockingbird Lane.
I always lose my nerve somewhere along the line with these things. It’s been a while since I had an all-out party here. How do I hold onto this feeling?
I guess I would ask Nat’s teachers to help prepare him for all those people in the house at night. Maybe I’d have someone here for him, but I don’t see how that would work. Maybe he’d want to dress like Zorro, his usual. But it would not be a party with kids, so he’d probably just be upstairs. How would that work? I don’t know if that would be okay with him. Here’s what I wish: that Max would invite him in to watch a movie with him on his new TV. Nat loves Max’s bed. He also loves Max, who is always kind to him. They could sit together; Max at his desk, on his laptop, and Nat on the bed, lying on Patrick the huge stuffed dog. Ben would probably stay away unless we rent The Matrix, which Nat loves (all that falling off of buildings). Hmmmm. Then maybe all three could watch together. That would be another present.
I really like to rank stuff. It focuses my mind on that category, in a new way. Tonight Ned and I ate dinner in a funky little place in Cambridge called Magnolias (all NS ‘ favorites: New Orleans-style food, lots of sausage; and for me: sweet thaings, beads everywhere, glorious atmosphere).
One thing we talked about was the five senses. Why is it that we make such a big deal over taste, when actually it is about as ephemeral as smell? I guess it’s because there’s this whole swallowing component, which makes taste somehow seem bigger than smell, which is basically breathe it in and it’s over.
So then we ranked the senses, best to least important: 1) seeing; 2) tasting; 3) hearing; 4) smelling; 5) touching. Ned, on the other hand, puts touching way up ahead of hearing. He’s very tactile; I’m very visual. We agreed that touch includes something touching you. Still, I think seeing is the best. I wondered how a blind person would feel; would they admit to missing seeing, or would some other sense have grown that much stronger that it was really okay to be without it? I would miss it. Just looking at Ned’s beautiful face across the table assured me of that.
We also ranked body parts, and vacations. I can’t tell you about the body parts, no real surprises there, but vacations for Ned: Cape Cod. For me: the first trip to the Atlantis, in the Bahamas. And Colorado.
It was a fun dinner. Afterwards, the usual: a trip to Brookline Booksmith because I was out of books. I have just finished Mark Haddon’s A Spot of Bother, good, but not as good as The Curious Incident, and Tom Perrotta’s Joe College, which I absolutely adored. I loved it so much I emailed him. He’s cute and lives in Belmont. I also finished Alice Sebold’s The Lovely Bones, devastating and thought-provoking, and I wanted to try her memoir, Lucky. I also got Towelhead, about an Arab girl living in Texas. MmmmmArab story.
My next novel (after Dirt), is going to be about a Jewish woman who discovers bellydancing and maybe falls in love with a Lebanese waiter. Maybe. How will I fit autism into that? Wait and see. Or I will convert The Scent of Violets into the prequel to Dirt, because it kind of already is. It has baby Max in it (as “Sammy”)! And toddler Nat, (“Jack”) doing eccentric things. I wrote it when I was in the thick of it all.
Here is a ranking of my books that I’ve written, favorite to least: 1) Dirt; 2) Making Peace With Autism; 3) A Distant Picture; 4) In the Presence of Mine Enemies; 5) The Winter is Past; 6) The Scent of Violets
I love them all, but some are far more flawed than others. Like everything else.
I noticed a couple of letters to the editor that I agreed with, in today’s Boston Globe. Apparently the Bush Administration has asked that a particular breast-feeding campaign be toned down because it uses scare tactics regarding bottle-fed babies. In this particular case, I say, “Go Georgie, Go!”
One size does not fit all. Some people want to breast-feed, but for many reasons, personal, economic, physiological, cannot. It is generally not about ignorance, the choice to formula-feed. And that choice should be okay. Yes, I breast-fed Ben successfully for nine months. It was wonderful. I still remember saying to him, “Hi Benji! Wanna eat?!” and how he would lunge towards me. The whole thing was sweet, as if it happened in another lifetime. Did it make me closer to Benj? No. I think a whole constellation of things did that. Did it make me lose baby weight? No way. It made me keep my weight on. Did it make Benji my healthiest baby? No. In fact, of the three, he is the only one who has an allergy, and who had upper respiratory problems.
No, I am not a Militant Milker, nor a Ferocious Formula Feeder. I did what I could, I did what I had to. That’s what we all do. And that should be okay. We need to support nursing moms at work and in public, etc.. etc.. but for God’s sake, parenting is hard enough without forcing everyone to figure out how to fit a soccer-sized football-shaped object into a tiny baby mouth. Healthy children are grown from a combination of factors. Nat was my least sick baby, with Max as a close second. Both breast fed for only a few days, until I could take the pain no longer. With Ben I learned how to deal with the pain. End of story.
Beginning of new story: baking with Nat. He doesn’t want to! Oh, how the mighty are fallen. Now we all see that what is going on with Nat is probably plain old ornery teenage boy shit. He is contrary, stubborn, moody, annoying. Welcome to 18 year old parenting. The only difference the autism makes is that he is not talking back. So I got that going for me, as Bill Murray said in “Caddyshack.”
No Petite Jamilla this weekend. The workshop was canceled. I was so looking forward to learning from PJ, one of the best bellydancers in the world. She is part of the Bellydance Superstars Troupe. The workshop was to be all about double veil and spinning. You have to know how to spin if you’re really going to bellydance. Hair tossing and complete letting go of your head and shoulders is a must in a captivating performance. But it has to be done right, or you can injure yourself or look like an idiot. I can spin just a little, with my eyes closed, but then I may bump into something. At least I don’t get dizzy.
But PJ is a spinning maniac. Not only that, she is a sultry and talented dancer (Ned has a tremendous crush on her). She has the cutest little moue, is almost winking at you from behind the veil while she pouts. It is that pout that got Ned.
At the beginning of this performance, where she is dancing to Ramses’ Ajaja, from the Desert Roses CD, she does amazing isolations, upper and lower, some great Mayas that are both loose and controlled. Utter bellydance perfection. Then the pinnacle of the dance is her mesmerizing double veil and spinning. But you should watch this performance all the way to the end, As her last move, she does a brilliant little earthquake shimmy to simulate the crazy weeping at the end of the song. Earthquake shimmies, also known as “ecstasy shimmies,” are illegal in Egypt, by the way…and so hard to do gracefully, without looking like a column of flesh-colored jello. For me the ecstasy comes in exerting just the right amount of control over the shimmer.
It is looking like I really might be going to Shanghai in early October for the Special Olympics World Games. I talked to my friend who is heading up the Special Olympics, and he seems pretty eager to make it work for me, especially now that the New York Times might be interested. This is all a house of cards, of course, because no one has guaranteed me anything, but I am now going into full gear to make this happen, and when I am in full gear, watch out! I feel that I need to have a true assignment to justify going away for a week. I can’t just go and then figure I’ll write something lovely. I need some kind of commitment from some editor somewhere. SO is going to do what they can to help me get that, but who knows?
I feel a little selfish contemplating it, because leaving Ned and the boys for a whole week is huge and difficult. Ned won’t sleep well, Nat will be nervous and upset, Benj will miss me and Max will, too, in his own quiet way.
But I do wonder what it will be like, being in that ancient/modern city, all alone, but on a job. So different from what I usually do. But then I also wonder if I’d get to meet autistic athletes from all over the world! I’d get to watch Dragon Boat racing (?) and other events that I’ve never seen before (cricket, equestrian). I’m pretty sure it will be a fascinating place to be, and if it’s meant to be, then I’ll go.
It’s Rosh HaShanah, literally “the head of the year,” the Jewish New Year. Ned’s company doesn’t seem to realize that this is one of the most important days of the year to Jews, and so they have scheduled some kind of big deal dinner. So that’s where he is.
I made Rosh HaShanah dinner for my boys and me: candles, juice in a wine glass, round challah (the circle of life, of course), and apples and honey. Baked potato and roast chicken. Nat said the prayers and Max tried to join in, but really Nat knows the Hebrew best. Ben just kept saying, “Mother, it is not January! The New Year is in January!” What a pill.
We went around the table and talked about what we would like the next year to bring for us. Ben wanted more healthpoints I think (gaming talk), and Max kind of said he hoped he’d do well in school, after I suggested that one. Jeez. I didn’t ask Nat. I don’t really know why. I just wanted him to have some peace, and us, too.
I had an amazing session in therapy today, where we talked a bit about 18-year-olds and the need to let your children leave, grow, explore, learn, make mistakes, all of those things. Through a thick haze of tears I listened to her tell me I was a devoted mother because I knew I might have to let him go and live somewhere else, where they could really help him and work on all of his marvelous skills. There, at the school’s residence, they would work on his IEP 24/7. Independent Living, all that, all day. He would begin to learn how to live among others, rather than just his loving, soft Mommy and his strong, wise Daddy. And his puppy brothers.
I don’t feel like a “devoted mother.” I feel like I failed, somehow. Like I was hired for a job that I was not qualified for. I had rushed in, persuaded all the powers that be that I was the one to be a mom on November 15, 1989, I wanted it, wanted it, wanted it. I didn’t want to be alone. I wanted someone who needed me.
So, along came Nat. You know the rest.
I was all wrung out from therapy, but full of a better understanding of what my role as Nat’s mom is or perhaps what it will be. It has never been what I thought it would be. It has been full of stark, raw surprise, a wide open hurting heart, low-level chronic depression, and explosions of sharp, pink joy. Loving Nat has been better exercise for my heart than all my running, biking, and dancing. And now my life with him is taking me past another huge milestone and into brand new territory. But it feels like a bit of a finish line, too. A passage. Perhaps we earned this, Nat and I.
I poured some of my emotional energy into following up on some articles I’d pitched here and there. And then I got an email from a New York Times Magazine editor asking if I would perhaps write a column for “Lives” about Nat.
I made some wishes as I blew out the holiday candles, the usual stuff about my loved ones, the basics. God already knows what I would ask for but I have found that it never hurts to reiterate.
Ooh, you make me live
Whenever this world is cruel to me
I’ve got you, to help me forgive
You, you’re my best friend.
In my family we have what’s called “the sap gene.” This is when we get all mawkish and mushy over something, where we just give in to the feeling until we are dissolved in it. So here goes: I feel like an abused woman who walks on egg shells. But it’s not an alcoholic spouse I fear. It’s my own son. Nat came home with a chip on his shoulder; probably upset about the weather. Now he won’t even let me use the phone! He keeps talking about dinner, and it’s only 4:30. Yet he won’t eat anything. He just walks away from me, screaming, bellowing like an animal in pain. I have been crying all day, because I don’t know what we are going to do if this doesn’t get better.
It doesn’t help that it’s 9/11 and raining. Or that I keep flashing back to happier times, to my little Stand-up Natty, who would push up from my lap on his strong infant legs, grinning about his marvelous feat (feet). And then there was Natty In the Mirror, who delighted at his own reflection. I am getting so maudlin, I’m as gross as a package of Splenda, but what else can I do? This is my F***ing outlet. I hate crying to my friends, I feel embarrassed doing that; or to Ned, who is bearing his own pain about this. I cried to Mom for a while, and I thank God she is there for me, although I wish she were right here. (She’s coming on Sunday. I want to take her with me to The Middle East to see the bellydancing.)
But I wish there was someone to whom I could just say, “Now please figure this out for me.” I keep feeling like there’s something else I should be doing. I talked to his school today; I talked to insurance companies to straighten out our many bills. Anything to stay busy. I exercised and tried to exorcise the pain, but it was a temporary relief.
and the I.T. Crowd made me laugh last night. There is always relief, but for now it all feels sniffly and teary.
Hey – I just found out on I.M. that Ned is coming home early to help out. So I’m crying again. That’s my best fwend. That’s my silver lining. Now the sap is really flowing. I’ll stop before you all have a diabetic coma.
Before falling asleep Ned and I talked more about Nat. Ned is resisting my basement apartment idea and also the idea of him living at his school. I found myself thinking, “Ned’s not ready to get to this next phase.” I kept checking in with my heart, searching for the pain, like you do with your tongue in your mouth when you have sore there. Yup, it was there. But mostly there was this dullness, this vague uncomfortable feeling which I now think was fear. If I let him go, will it be a mistake?
I fell asleep, and dreamed that I was at a vacation resort somewhere. My mother was there, too, but she was very small, and also disturbed, it turned out. As I entered the room, she shot at me. Reverberating through my head were the following words, from a (helpful) comment from yesterday’s blog post, “Your third grader deserves his place in the sun, after all Nat had his turn, right?” I woke up screaming.
I got up and walked around to clear that horror away. It came to me that in the dream I may have been Nat, and my mother was me. I kept hearing those words, but then imagining the fear of the gun on me. As I’ve said before, I don’t feel old enough to be a mother, let alone a mother with such issues to wrestle with. I know in my head one thing, but in my heart I fear abandoning him. I fear (probably irrationally) that giving him over to the care of others will feel like abandonment to him. I cannot bear that. Neither can Ned, I know it. We are one in this. We are not ready for that kind of change. We want things to get better here, that’s all. Even though I have seen what a marvelous job most of his teachers have done, over the years, that fear remains, a black mildewed presence at the bottom of my heart.
Yesterday was a real low point for Nat. He was so anxious in the morning, and it was because Ned could not adequately explain to him that after they got home from food shopping, it would not yet be time for lunch. This made Nat aggressive throughout the entire food shopping trip, and it was quite a struggle for the two of them to be calm and safe. Ned was almost tearing up as he told me; I sure was.
Homelife it was not much better; at one point Nat went stomping and arm-biting into the playroom where Ben was, and Ben yelled at him harshly. So I had to speak to Ben about that while also trying to attend to Nat. I am so fed up with saying to Ben, “You can feel however you feel about Nat; but you can’t say _____ or _____ to him or even around Max, because it will hurt their feelings. You don’t have to like him, but you can’t call him names.” Phew! I don’t know if he hears me and I am so sad about their crumbling relationship. I completely understand how Ben feels scared, vulnerable, and intruded upon; but I can’t understand why he can never find compassion or understanding for Nat. Never. It is like it is sealed off inside of him somewhere, and that scares me.
I began thinking of what to do. Residential placement for Nat? It feels a bit too soon, although he’s just about 18 and will one day be living on his own, God willing. But to have him live at school feels like he would miss out on the chance to have any kind of bond with Ben. And how could the people at the school love him the way I do? Which is better for him? Tough love or mother love?
This morning, at 3 a.m. — the time of day when, if you are awake, then God help you — I was going over everything from the day before. My heart was racing and I knew it would be hours before I could sleep more. I wanted to cry, thinking about Nat and Ben.
Then, I think I stumbled upon a solution: create an apartment in our basement, with two bedrooms: one for Nat and one for either a higher-functioning buddy or a personal care attendant. Nat could gradually move in down there (it is actually above ground and bright in our basement, with bay windows and woodwork, believe it or not) and get used to his new digs. Then all we would need from the state Department of Mental Retardation is the funding for the Personal Care Attendant and a Job Coach, and not housing, which is very hard to get. But best of all, it would give Ben and Nat space from each other without uprooting the family entirely.
And also I’d get to decorate the whole thing with all of Nat’s favorite colors!