Susan Senator

I am he as you are he as you are me and we are all together.
–John Lennon

The reversal of pronouns in autism has always been an interesting issue to me. It is nearly impossible to teach someone how to say, “I” when they mean themselves, rather than saying, “you.” For a while we were told by our ABA-ist teachers that we should prompt the correct sentence by saying, “Say, ‘I'” only to find that Nat then required a say-ectomy, as Ned called it; many sentences were needlessly starting with “Say.” Then we were told to drop “say” and just model “I.” But Nat would say “I” and then go back to saying “you” when he meant “I.” I is changeable (as opposed to I am changeable) in value and meaning, depending on who the speaker is.

Nat either did not understand the concept that I = myself and each person uses it accordingly, or he was not able to call up the correct word at the correct time. I believe it is the latter. Nat knows quite well who he is and who I am.

But in a more philosophical/psychological sense I have been wondering about autistics’ sense of self vs. NT’s. Nat has a different view of my responsibility and power of the universe than my other two children. Nat’s worldview appears to be “younger,” to put it in NT language. Or to map it developmentally, he may not have entirely separated himself from me, or me from the universe. The word autism itself implies a self-centered worldview, but sometimes that doesn’t seem quite right. It is more of a differently-connected worldview, whereby Nat might be heavily connected to me, and sees me as intricately connected to the universe? Ben and Max have figured out that I am fallible, though it still displeases them, and that I don’t control things like the streetlights or the weather.

Or it could be that Nat does understand that I don’t control those phenomena, but that he merely expresses his frustration with weather, etc., by putting it on me, venting to me, because I am the first person he ever knew. I.e., I am safe and he knows it. (“Mommy will fix the streetlight.” “It will be sunny out.”)

Or perhaps he is saying, “It will be sunny out” because he is checking with me(?)

I was thinking about all of this because my wild pony boy cantered out of the woods and nickered into my hand this morning. What happened was I came down from the shower and he came up to me and said, “Want to smell me, yes.” And before I could parse the sentence, he leaned in and sniffed my hair, melting my heart and getting me all sugary inside.

What a nice day. Ned calls this kind of day a “Productivity Day,” whereby you get a lot of things done in a very satisfying manner. (Productivity Day first started when we were in college, and he had to go out and get me a lot of presents for my birthday, and nothing else; he just had to succeed at hauling back goods for me.)

Here is a little list of what I did today that felt good:
1) Started calculating how long it would take me to finish Book 2, the last piece of signing the contract. I used my agent’s book as a guide. The due date is very tricky. It shouldn’t be too far out, but if you make it too close and you miss it, the whole deal could go under.
2) Finally got Nat to ride a bike with me. We did our old loop around the pond, which is a 15-minute ride, very safe, very close to home. Except for the part where the front end of the bike was completely reversed and he was trying to ride it anyway, all went well. He is an extremely careful and people-aware rider. Beautiful.
3) Changed all the bedding and did all the laundry. Snore, but how satisfying it is to see the beds all crisp and white.
4) Mailed an autographed book to someone who had requested one weeks ago (thanks, Gretchen!). Also mailed Kimmie’s wetsuit top which we had by accident.
5) Got some recipe ideas and became psyched to cook again, because of Real Simple (thanks, Sarai!). Bought the necessary food (but the cute guy was not working at the little market today).
6) Got my hair done, at last, and had a lot of fun catching up with my hairdresser (her name is Gregory and she’s a lovely lady). They gave me $60 off because I had referred three people.
7) Third successful diet day (Atkins Phase 1).
8) Dance and photo shoot, I hope.
9) Ten new episodes of Season Two of Entourage, currently my absolute favorite show.
10) Nat is responding well to the new meds regimen (Knock on $#Q$%# wood)

Tomorrow: bike ride, make ice cream, cook a great feta and shrimp salad.

I was headed into a downward spiral…a workout in this costume saved the day.

I Love My New Costume!!!!! … See my Tabblo>

You are brittle
like those sand rocks
that Ben crushes in a sweaty brown hand
You scatter at my touch
You are all movement
like the gnats
you are gnot named for
You are still
like the ground
which is not at all
still
(tectonics and all)
You are strong
like bone
that holds up a body
and splinters like matchsticks
Sometimes.

Try to catch the deluge in a paper cup.
–Crowded House

Several things going on that are crowding my brain. One is we just discovered a whole packet of summer homework for Benj!!! He has to do 2 1/2 pages of journal writing, ten times, before school starts. He also has to do twenty math problems each month. We just did several time-telling questions. It is a bit of torture, trying to get a child to do homework when it is supposed to be vacation time!!! But I have told B that he “has to” do it, even though it is kind of optional. He is not the kind of kid who who will volunteer to write or do math, but I want him to develop into the kind of person for whom extra work will be more natural. So I say he has to, pizza party or not. So essentially I have to do math this summer and 4th grade level journal generation.

Another thing I’m thinking about is whether to accept an invitation to attend the Special Olympics World Games in Shanghai this October; I’ve been asked to be an Honored Guest. My agent tells me Shanghai is “amazing,” and “a real contrast of incredibly ancient, old and new-new” and that this is “the opportunity of a lifetime,” and “imagine all the contacts I will make.” Sure, but what about my husband and sons, who will be left alone for a week? Can we really manage that? Will they be sad, inconvenienced, etc.? Can I travel alone to China, a 20 hour flight, etc., etc.? Is it safe? Is it scary? Will it be as wonderful as it seems?

And the third thing is my new book. I am about to get my contract (today or tomorrow, my agent is finishing the finer points).This is great, wonderful, etc., but I need to start putting together a small cadre of “gal pal” moms whose kids have disabilities different from Nat’s and who want to chat with me at length about various topics pertaining to their lives. Maybe you have friends whose kids have CP, Down Syndrome, diabetes, whatever who would want to be in my new book. I am looking for different disabilities, different parts of the country, and any other form of diversity. You can email me privately, don’t leave it as a comment. I may not contact you but that doesn’t mean I’m not interested in your story. I store all contacts in a file on my desktop and delve into them bit by bit.

The thing is, I need to have some good conversations on the phone, to kind of get to know these women. This particular book is aimed primarily at mothers, but if you’re a dad of a disabled kid and you have something unique and important to say in terms of how you have fun despite challenge, I’m listening. So I’m generally not looking for fairly severe autism, or Boston area, (I kind of have that covered with my own story) but I will be happy to consider you as well if that is your situation. You will have to sign a release allowing me to use your words in my book. No compensation, by the way, but a chance to get your ideas out there in terms of how you personally stay happy and positive in the face of adversity (overall philosophy and/or specific tips).

Another thing is I feel that I am getting fat. (And no, Mean Anon I am not fishing for compliments I am just expressing my own anxiety. How many times do I have to say that this is my own freakin’ blog and if you don’t like it, unsubscribe. I don’t give a shit. I write and write and that’s what I do. I crow, I whine, I wonder, I cry, I laugh. It goes right from my neurotic core to this computer page. So shut up and stop reading me, you creep.)

And finally, I don’t know if spacing out the Resperdone is so great for Nat or if he actually needs more, period. It certainly helps his anxiety at 4 pm. to do this, but then at 9 last night he flipped out over the toothpaste. D’oh, I don’t want him to need more, that drug scares me.

It’s 7/11, and I’m slurping a huge coffee in its honor. Actually. I slurp huge coffees every morning, but this one is especially delicious because NS got up before me and made it for once! And in about a half hour I will have a foamy latte, because my sister brought her mini espresso machine.

This is Laura’s last day here after which she will go down to the Cape with her kids to see our parents. It has been a great visit. Ben and Kim have played nonstop. No fights at all, although they almost never do anyway. Paul has played more with them than he used to, because Max is a bit more independent and busy. And fifteen. But he will still get out the video camera and film their movie. For a few hours I kept seeing Ben, Kim, and Paul running around in costumes and black capes; can’t wait to see what they made!

Natty hovers around the edges of their activities. Once, when they went out to play, he joined them, even rolling down the hill once with them. Laura went with him on a walk to Starbucks, which really melted my heart. She just loves him so much and always tries. Even though the night before he had probably the worst outburst in months. Poor Ned has blood blisters on his hand.

But having Laura there to observe the entire thing led her to wonder if Nat’s meds are at a low at dinnertime, which is when the outbursts happen generally (even with the daily note, efforts to eat all at once, spices accessible). She is a seasoned pediatrician, and she suggested that we split Nat’s evening Resperdal, giving him one of the halves right when he gets home from school, and the rest at bedtime. I emailed my doctor and asked what he thought of this. He gave us the green light, so last night we tried it.

Nat took his meds and went on the walk with Laura: the Starbucks for an M & M cookie, about a mile away. When he got back, there was just a minimum of questioning about dinner, and when would everyone be back and at the table. And that was just me! No, I’m kidding. What I’m saying is Nat seemed to feel really great last night. Of course now I don’t know whether it was the boost in Resperadone or if it was Laura’s sweet attention!

He even had Laura read him two stories. She told me that while reading Dumbo, he gets very quiet during the parts about Dumbo’s mother. Oh, Sweet Guy! I will never let mean people flip your ears!

Here it is, the loveliest part of that movie:

Baby mine, don’t you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine
Little one when you play
Don’t you mind what you say
Let those eyes sparkle and shine
Never a tear, baby of mine
If they knew sweet little you
They’d end up loving you too
All those same people who scold you
What they’d give just for
The right to hold you
From your head to your toes
You’re not much, goodness knows
But you’re so precious to me
Cute as can be, baby of mine
–Dumbo’s Mom

Okay, maybe I’m a loser just wallowing in the past but it is the one year anniversary of my dinner at the White House and I just can’t get it out of my head. That was soooo much fun, you just cannot believe it. Ineffective narrow-minded president or not, he is still the President of the United States. He joked with me to set me at ease during the picture-taking, and I will always appreciate him for that kindness. But I don’t appreciate his behind-the-scenes pea-brained attitude towards the Special Olympics simply because of the Kennedy family’s involvement! How stupid can you get? (Thanks, Catherine, for the link!)

The other guests were so great to meet and talk to (Maria Shriver, Tim Shriver, Eunice Kennedy Shriver, Ted Kennedy, Vanessa Williams, Arnold Schwarzenegger, Barbara Walters, Tim Russert, Tom Harkin, and all the Special Olympics people, too, including a star from the movie The Ringer, a flick I highly recommend.)

Ned and I dressed to the nines, he in a tux and I in a frosty pink Shelli Segal that was like a piece of candy, with strappy pink snakeskin high-heeled sandals and a creamy white shawl. Someone said I looked exactly like Sarah Jessica Parker. I gave the First Lady a copy of my book and felt like a queen. Not a bad day for an autism mom.

I was invited to a White House dinner in honor of Eunice Kennedy Shriver because of my book, Making Peace With Autism, and my writings about Special Olympics. The trip was like a dream, the pinnacle of my career as a writer thus far. Our hotel was beautiful and also kind of cool,
with its federal-meets-hip-contemporary-sixties-air.

… See my Tabblo>

Peanut, peanut butter!
Jelly!
–Barney

Look what I saw today! No, I was not swimming too deep in Cape Cod. My sister is visiting and we took our kids to the Boston Aquarium. Laura took this picture and it came out far scarier than the actual shark. Truth be told, the scariest thing I saw there was a jellyfish creature called Thetys Vagina. No lie. I stared at it for a while (well, why wouldn’t I?) trying to figure out who was this unusual Thety? Why? What?
And my sister the doctor/scientist explained matter-of-factly: “It’s because of invagination…all of the folds.” Oh.

Went up to the cafe to eat “lunch”, only an hour later (at 11 a.m.) Paul had a squooshed peanut butter and jelly on a hamburger roll (don’t ask, I ran out of bread). He nearly cried, poor thing. Max, Ben, and Kim had bad bagels. Luckily Kim shared hers with Paul. Nat was not there; he has school all year around which made the trip easier but the Mommies sadder because we knew how much he loves the Aquarium, especially the Pinklins. (sound it out) $90 and 4 crabby kids later, we got jelly donuts and went to Faneuil Hall. Now that was dull, except when Ben fell off the statue, trying to escape from the picture-taking.

My nephew said, “This is my second time ever on a train!” Max was incredulous. So was I. A real case of Johnny Town Mouse and Timmy Willy.

A really great comic strip came my way via one of my autism email lists (Thanks Lisa!). A huge topic of conversation among autism parents is “the comeback that got away.” Why do our words leave us when we have an obvious situation demanding that we step in and straighten out some jerk? Like the teenage twits on the beach who were laughing and staring at Natty. I should have said, “_______” Instead I flung sand on them. Or the family who kept staring and whispering about Nat and Max (because of his dreds, I guess). Eventually when we were leaving I caught the dad’s eye and stared at him. But he smiled at me, so I waved. D’oh. I waved! Why am I such a nice girl?

What is the best comeback you have ever had for a rude person? Maybe I’ll get to use one of them one day.

Nat has not told me in so many words, but judging by what makes him smile the most, here is a list of what I believe are what Nat would say are his Keys to the Universe:

1) Eating a meal with my family all together at the same time
2) Salt and pepper by my side
3) Sun
4) My yellow tee shirts
5) A good bit of word play (“Aunt John and Uncle Laura”)
6) My wetsuit in the cold ocean at Cape Cod
7) Sneaking a thumbsuck
8) The Beatles
9) Fudge
10) Special Olympics Swim Races, especially winning a medal

Hooray for Walgreen’s! They are setting an example for the rest of the country. Why the hell not go that extra yard and hire a lot of people with disabilities? Are non-disabled people always such a bargain? There is a huge untapped workforce among those with disabilities. With a little creative thinking and openmindedness, we could be employing a full range of people and who knows what kind of positive changes that could bring?

My first phone conference meeting with the Young Adult/Adult Services Subcommittee of Autism Speaks went very well, by the way. They are a dynamic group of people from all over the country, real powerhouses in autism resources. Per my suggestion, they are going to set up an Autism Works section on their website and they are striving to become a clearinghouse of information and resources for the employment of autistic people. We want to know about good role models, employers who, like Walgreen’s, are moving beyond society’s barriers to build a more dignified, diverse workforce. We are also going to be writing a paper on transition and pre-voc training, what educators need to know, as well as working with policymakers towards more legislation that funds employment resources for the disabled. All very exciting, exactly what I wanted to be doing, but with the muscle of Autism Speaks behind the effort it should bear some interesting fruit.

[Ben took this photo!]

Sitting here in my parents’ Cape house on their porch. They are here now, all is right in the world, thank God. They are watching a movie I’m not interested in. We are here to check teh internets, as Max would say. It has been so good for me to be without Precious, I must say. I live in the present when I’m here.

I am so proud of the boys. They are without their usual hobbies (mostly teh internets related) because our lovely rental hath no internet, and so they are forced to do other things. Max has been honing his photographic talents, and I am amazed at his beautiful eye! He loves to do insanely close close-ups of things, not people (except Benj, who is kind of a thing!) He is such a good-natured soul. He will fight you at first when it comes to doing anything different or eating anything different, but if you gently push, he will do it and usually likes it. Well, not food, but everything else.

He and Ben were watching Foster’s Home for Imaginary Friends, and suddenly they just shut it off and announced that they were making a movie! With Ned’s help they filmed a stop-motion frame-by-frame of Ben scooting along the grass. Tis very cute.

Ben has gone back to drawing story after story. His animation is fantastic. It’s too bad so much of his content is violent, but it is violent like Pulp Fiction; kind of cartoony violent. Is that better or worse?

In the water Ben is fearless and oblivious to the cold. He and Ned shared a boogie board today and actually rode a few waves that way. I used the board for the first time, even though the water was 58 degrees. It was so hot out that I was frying, so I didn’t mind the extreme cold of the ocean. There was fluffy, grasping seaweed everywhere, which I just hate. Plus a lot of rocks to walk over to get to the sand bar, and I cut my foot. So back to the blanket to read and work on my illicit tan.

Nat has been a little less eager to swim, even with his brand-new wetsuit. Ned kept joking that the wetsuit was defective because “it never gets wet!” Until Nat finally initiated it yesterday, when it was a balmy 60 degrees in the water. He and Ned were out for a pretty long time today. He has one very well on this vacation so far. A few outbursts, but two out of three of them were totally understandable. Today there was a brief shriek and I think it may have been an expression of discomfort with all that sun.

When they come back to the blanket from swimming, they always have to eat. I’m the designated Fooder. I make everyone have fruit first before their oreos, goldfish, and pretzels. I drink Diet Coke with Lime and one or two Atkins bars. Yes, I’m back on Atkins and the universe has righted itself again. I don’t know how you other people (carbivores) do it. Eating carbs made me crazy. All I wanted to do was eat and eat because I could never eat enough (too many calories). The only thing I could eat that I didn’t have to count was carrots! I felt like a horse. Do I want that? Neigh! I tried it for four days and by the fourth day I had eaten 1,000 calories by lunchtime — all in fruit and “non-fattening” things! I was in danger of becoming an exercise bulemic because I kept going on long, grueling bikerides or bellydancing to burn off what I ate!

Back on Atkins I am sane again. I am full after I eat, because I eat protein! Soy, turkey, eggs, cheese. I can imagine all the voices of Gerald O’Hara, Rhett Butler, and Ashley Wilkes, egging me on: “Protein, Katie Scarlett! It’s the only thing that lasts, the only thing worth die(t)ing for!”
“It’s from this that you get your strength: the red meat of protein!”
“Something you love better than carbs, though you may not know it: protein!”

“Protein! Protein! Protein! Atkins. I’ll go back on Atkins. I’ll think of some way to get thin again. After all, tomorrow is another day!”

Sure it’s boring but I’m never hungry. If I have to lie(in the sun), steal (a few moments for myself), cheat (and let Ben win at arm wrestling) and kill (time blogging), As God is my witness, I’ll never go hungry again!

Now a popsicle orange sun sets on July 1, melting into the purple bottoms of long flat clouds. Flashes of light are filtered through short muscular trees.

But in the morning the clouds warred with the sun; half the sky was scrubbed blue, half, hairy gray. Which would win? I took sips of not-sweet-enough coffee and watched. Too lazy to add more Splenda, I read a Cosmo that I had already read. A sexy short story, badly written, surprisingly arousing. Mind wandered to Ned, of course, buried under silky beige comforter and four pillows. Sleeps down deep, like he’s under water.

There suddenly appeared to be more blue than gray now. More coffee would help. Yes, I think the day will be saved, after all. No need to come up with an alternate plan. No need to explain a hike in the woods to Nat. But shouldn’t we do something different sometimes? But no. The capricious ocean waits, rolling impatiently in her bed of warm soft sand. The sweetness of sunblock in the air mingles with the quieter, heavier, female smell of the sea.

Ned wrote N+ S 23 in a heart. Max, Ben, and I built structures with sand that felt like a friend’s warm back when you pat it. I tried to get Nat to touch the sand, to help with the tunnels and the mounding. He said, “Yes,” but walked in the other direction. How many years, now, have I been trying to get Nat to actually play, NT-style, with the sand? But he still does not enjoy it at all. He would rather run in a large figure eight, looping around several families, in a crescendo of silly talk and puppet hand. Again the morning’s come, again he’s on the run, sunbeams shining through his hair, appearing not to have a care. Today, a gift to me, no one noticed.

Yesterday was different. Yesterday two French Canadian teenagers, maybe even older, grinned, pointed (subtly) and stared in what seemed to be disbelief. Believe it, Baby. C’est l’autisme. Ned said maybe it’s just that they think he’s cute. Ned said that I should use it as a “teaching moment.” Instead, I shook off a sandy chair in their direction and watched the particles land all over them. “I don’t owe anyone an explanation,” I said loudly, as they brushed the sand away, “especially when people are being rude.” I put down the chair and wiped my hands, while they looked at me, again in disbelief, waiting for an apology that never came. Jamais, mes amies. Vengeance is mine, sayeth the Lord (and the Protective Mama).

Thinking of Mom and Dad, not here because of health problems. Life picking on them, nibbling away at the edges. They brush it away furiously like gnats at sundown. Dad should be here. The honeysuckle and privet release a toasted marshmallow aroma when you ride by on your bike. A bobwhite bird called in my yard in the morning; Dad’s favorite. The peaches are fist-sized, fleshy and yellow; Mom would love them. I had two today in anti-Atkins frenzy.

I’m a bride today, and I feel special. Even though I also thought of men in my past. Well, I’m human. I just do it when I’m bored. Minds can wander. Thoughts form, run wild, and stumble and lead us to learn about ourselves. They stoke the fire, sharpen our awareness and yearning. But home is here.

We all five ate at our favorite restaurant, Moby Dick’s in North Wellfleet, almost into Truro, way up Route 6 where it’s marshy and meadowy and scrubby. Nat ate his first French fry there, sixteen years ago. Tonight we all shared two desserts. We gorged on hot fudge and chocolate brownie.

Max and Ned went to see the sunset and take pictures; I danced in blue and white and gold and Ben and Nat watched The Adventures of Billy and Mandy together. Well, Ben watched it and Nat watched him. I don’t blame him; I think Ben is fun to watch, too.

The sky is almost completely dark, a deep sea blue stained at the very bottom with gold and pink, ocean meeting sand. My sons, blond, tan, and strong sit and draw and talk together, while the third stomps happily around the room, laughing softly. My husband of 23 years offers to read to Ben. Handsome and sexy, Ned still has the power to make me feel like he did back in our dorm days, like a crazed, sleepless, and lovesick teeanger. Random Universe, my eye.

Summer’s here
and I’m for that.
–James Taylor

I was walking the Res with my friend L today and we discussed how rotten Atkins has made us feel. Yes, we were at pretty good weights, but we felt like sh**. Nightly upset stomachs, meat and cheese and meat and cheese and salads. Boring, boring. Blech.

I have decided that for this week I will only do portion control and count calories (and a ton of exercise, of course). I started today. I felt so virtuous I went to Bloomingdales and bought a new ruby red bikini. Then I took the boys out to lunch at their favorite place, Zaftigs. They had breakfast food (fat challah french toast and pancakes) and I had a grilled portabello mushroom burger and ate the roll. Oh, glorious, foodgasm. I had fruit and yogurt for dinner and just knew I was fine because the cals are low. MMMMMMMMMMMMMM

Packed up and got really tired figuring out the bike rack. Drove to the Cape in less than two hours, with a candy-colored sunset followed by a moon that looked like “a vanilla cupcake,” according to Ben (he is a great writer already!). Smooth ride in newly cleaned car with four brand new tires that were free because the company has a guarantee! Happy silly talk in my ear, animated Kingdom Hearts talk in my other ear, and lots of catching up with N.S. Our anniversary is in two days. We always celebrate it here, with our favorite people, in our favorite spot on earth and our favorite time of the year.

His Baby Perfume
It makes me swoon
He’s Baby Delight
–me, singing about tiny Nat

I saw my friend Emily today. She has one of those kind of babies that makes you want to have a baby. Little Miles is in that “jolly fellow” phase, where he is grinning and bouncing his head at everyone and everything, and only once in a while stopping to puzzle over a new face, a set of keys, etc. But it is usually okay with Miles, especially if he can chew on it. His little feet were fat and edible, his belly round, and a spot of drool remained on his chin from his recent fest with my keys. Emily offered to wipe off my keys but I would not let her. You could get drunk on that smell.

I used to call little Nat’s drool Baby Perfume. I used to love it when I would have my face next to his and he would have his thumb in his mouth, then he’d take it out and turn his head quickly to me. His lips would brush my face. “Slimed!” my dad once said, smiling. Today Miles’ Slimey Smiles made me think of Baby Delight and his Baby Perfume.

The Babylust is running strong in my veins. Sometimes I cannot bear being done with that.

Look at baby Nat, that little sugar boy!

Here is my Edge of Town essay, the regular column I do for the Brookline Tab, my local paper. I had a lot of fun with this one. How about that picture? Do I still even look like that? It was taken in February 2005.

(Getting all nostalgic for the MPWA years because the new book project is now moving along to a new stage. I have to meet with my editor and hammer out the details, and then line up some parents to talk to (whose kids have disabilities other than autism). If you are a mom who meets that description, e-me. We need to tawk.)

They say you have to feed your soul. I have no problem with that; sometimes I feel like I have to put my soul on a diet, it has become so gluttonous. Aside from hanging out with my boyz and my man, my friends, my sister, my laptop, and my fleurs, the thing that I love love love to do is bellydance, which you must know by now if you’ve been reading this blog with even half an eye.

But like any hobby, it is sometimes a challenge to keep bellydance fresh and exciting. I have learned all the basics by now, the moves, choreography, performance points, props. I have been collecting a lot of music, (put on your sound loud for a real treat when you click this) but I always need more. I have a good teacher and a good bellydance gang.

But what keeps it fascinating and fun, in a visceral way? Costumes. I belong to an amazing website that has a costume swap meet as well as all the bellydance conversation you can eat. Every day some diva lists a costume she is selling, and it goes something like this: “hot pink, all sparkles, circle skirt, gauntlets, made in Cairo…” If it is my size, I am in trouble. When I first joined Bhuz, I bought one pale pink costume. A second, a pale green, I swapped immediately because it was not flattering, and I bought my hot pink and coral Hanan with that money. Then I ordered my Safti, custom-tailored.

I was happy with those for awhile, and still I love them and I rotate each one when I perform (Ned and Nat are my audience. Nat is an unabashed fan; the other two boys stay far away.). But variety is the spice of life, n’est-ce pas? And yet, guilt is the meat of life, or perhaps the vegetables, the conscience. So I kept telling myself, “You can’t buy anymore costumes because you are not a real performer.”

Then I realized that that was as stupid as when I used to say to myself, “You’re not a real writer because you are not published;” or “because you don’t get paid.” Why do we set ourselves up for undermining?

I have an audience of two. I perform seriously for them. Right now, that is the best I can do. But why not treat myself to a new cossie every now and then?

So I satisfied my voracious hunger for new colors and beads and I bought this turquoise number that is totally over-the-top (and yet fits perfectly on-the-top). It has long fringe and tons of chunky beadwork. A long, trumpet-shaped crocheted and sequined turquoise overskirt and frothy blue chiffon circle skirt underneath. Turquoise crocheted gauntlets (sleeves). It is a vintage Dahlal, the very best costume designer. Only I did not pay Dahlal prices, because this cossie is gently used. But aren’t we all, in one way or another?

Under the table and dreaming.
–Dave Matthews Band

After dinner, Max and Ben were working together in the playroom on an RPG (Role-Playing-Game) program. Max has taught Ben how to use this simple pixel-based program to create different adventure-type video games (the blocky ship sails to the brown-patterened sand; the gnome-like boy gets off the ship and walks into a cave and ends up among elves, that kind of thing). The ugly synthetic rubbery music lives in my head, I hear it so often. But I love them playing together. It is endlessly delightful for me to look in and see them, one a miniature of the other (bulky black tee shirts, army cargo shorts, long hair). Nat is not interested but I hope one day he will be because it seems like something he’d like, too. There is a soothing simplicity to the characters and props; there is a lot of going back and doing the same thing. And I’d love for them all to play together, needless to say.

Ned and I were together in the dining room talking about some good news I had and how we should celebrate. Our laptops were open and we were laughing at something from behind our screens, which is one of our favorite modes.

Suddenly, “Mom!” It is Max’s voice.

“What?” I am already alarmed, because why would Max call me when they were doing the RPG together? If Ned is home, he is the one they call to show them things and ask questions, because the bulk of their conversation and questions are technological and technology is right out, as Monty Python would say. And Max is very unlikely to call me about something, period. He usually justs sucks it up. I am not happy about that but over the years I have learned how and when to draw Max out, and leave the rest to him.

“Something under the table.”

My stomach twisting, I say, “What?” even though I had heard. In this house, it could be anything. We have a termite contract and a separate quarterly all-pest contract, a bat no-entry guarantee and more. But there’s always something, especially in the summer…

“What?” I say yet again. They point under the table.

“It’s brown.”

“Brown?” I crouch and see nothing. I move closer.

“Ben says he saw a smaller one like it somewhere else.”

“A smaller one somewhere else?” It seems all I can do is repeat things to comfort myself, a la Nat.

I lean in, doing my Brave Mommy act. I see a small, brown thing, about the size of half an almond. No legs, no eyes, no hair, no antennae. A big roach egg? But no, those are pale (you shouldn’t know from it, but I do, 405 South 41st St., Philadelphia, my honeymoon apartment otherwise known as The Roach Motel. I actually witnessed what must have been a female roach laying an egg in panic and then running away from me. Some newlywed memories you just never forget).

Knowing it has no legs or eyes emboldens me. I peer closely at it, going up several notches in my sons’ estimation. A rat turd? But it has lots of white dots. I gingerly pick it up.

It is not a larva. It is not a legless bug. It is not a huge rodent turd.

It is a crushed, partially melted Sno-Cap. Ben had eaten them at the movies yesterday when we saw Evan Almighty, which I thoroughly enjoyed, despite its flaws. But I am all about enjoying-with-flaws. But never mind…

If I were my dad, I would have further stunned and horrified them by eating it. But it is not Atkins-friendly.

“Ben! It’s a Sno-Cap!” I’m laughing, with relief, and besides, how the heck did it get there? Yet another mystery of Life with Messy Boyz.

I made the following comment to a recent blog post of mine, but I think it is important enough an issue to make it a new blog post.

I feel a couple of things about our entire “Insult to the Autistic Community” discussion. For one, I feel remorse that I inadvertently made a statement that out of ignorance was a step backwards for the cause of acceptance of autistic people. Amanda and some others were objecting to my little wish, that in that photo, I could see Nat as “truly older than Max.” The way I understand this to be insulting to Nat and the autistic community is that he really is 17, no matter what, and to wish he acted like an NT 17 year old is as if I am saying it is somehow inferior to act as an autistic 17 year old.

I understand and respect this point. What I don’t like is the sometimes belligerent tone that the discussion took. I don’t like thought police. But if autistic people are telling me that what I did is akin to using the “N” word against blacks, or “retard,” for the developmentally delayed, then I will be more careful in the future.

I will say it again: I love Nat as he is, but the world is NT and it is more difficult to live your life NOT NT, and I want him to have a better life. Let me elaborate: I believe he loves to work, from what I have seen, but getting employment will be very difficult for him without a high school diploma, certain skills, etc. I believe he loves women, but I am not at all sure he can find a girlfriend with his functioning levels and lack of conversational skills. He would probably like to live on his own some day, but he will not earn enough to do that with the small job he can do. As a mother, it is my right to dislike those facts. Just like I dislike that Benj can be very cranky, and doesn’t like sports, and this will exclude him from some valuable relationships. I don’t want Nat (or Ben) to change, but it would make me happier sometimes if he were more able to function on the world’s terms. It would make me happier if he could share his thoughts with me. Yes it would. That does not mean autism is less-than; it means autism is more difficult. Just like probably being gay is more difficult. Or Jewish. It should not be that way, no it should not. It means that autism sometimes makes me unhappy. But so do my other children’s issues (Max can be difficult to motivate, etc.)

Meanwhile, I also feel a little pissed off because I hope that the point of my blog post was not lost on everyone. I am annoyed that there was absolutely no quarter given to me by the other side, no benefit of the doubt. I did not like the tone of some of the comments. But I ran nearly all of them anyway.

I am okay with learning something new, and I have. Maybe we all have.

Finally, I stand by all my feelings about that picture, but I will restate them differently now. I loved the way Nat looked in that picture. He looked more connected, okay? He looked older. Like he was up to something. I like that. Call it whatever you want. He looked — I don’t know — familiar, somehow. He looked like himself and yet not. I have a picture of Max that is like that, too, btw, where Max looks older than he is and I have a glimpse of the man to come. Maybe that is what I saw. The man Nat could/will be. He is still my Nat in that picture. I will leave diagnosis out of it for now.

These questions are not rhetorical…

Why do people get grades in gym but not in art?
Why can’t I lose five pounds?
Will I ever have the courage to bellydance in a club?
What should I read now?
When will I ever have time to go to the eye doctor?
Why do so many people care about The Sopranos?
Do more people get kicked to death by mules than die in plane crashes?
Why are my neighbors always so blooming happy?
Should we try to go to Comanche National Grasslands while in Colorado?
Will that camp be good for Nat and good to Nat?
What is a high school diploma for?
Why is blood thicker than water?
Why are there no pretty shade flowers?
Will we like Evan Almighty or is it as stupid as it looks?