Conversation at my table right now:
"John is another name for a toilet, you know." --Ben
"Ha ha ha ha, really?"--his friend, M
[munch munch munch on chocolate cookies -- ah, the smell!]
"Is Mr. Dumb here?"
"Ha ha ha ha ha"
"Is Doncha here? Doncha Want Me To Poop On Ya?"
"Is God here? Gotta Fart?"
"Hahahahahaha"
"Let's go upstairs and play."
[they exit, leaving lots of milk and zero cookies behind them]

I just love the nine-year-old mind.

Speaking of which, here, FYI, is the column I did in today's paper. It's chock full of local minutiae so it might not be too accessible to everyone, but there's a couple of good chuckles, I think.

Ad hoc, ad loc
Quid pro Quo
So little time
So much to know.
--The Nowhere Man, Yellow Submarine

Here is an article written by one of my closest friends. We have been activists together in our town and schools for more than ten years. I am so proud of how she manages to push consistently for her issues, and yet still remains a credible member of our School Committee and town. Sometimes her work may irritate people, as does mine. But we cheer each other on, and remind each other that it is not often a comfortable place, being an advocate for change.

It is hard work, calling people's attention to something they don't want to think about (they have their own crap to think about, after all) and trying gently to get them to care about one more thing. And not hate you for bearing that message! Everyone's got their full plate, plus the newspapers add a second helping of stuff to worry about, so it is a lot to expect others to automatically care about our issues. I am convinced that people need to hear things, the same things, many, many times in different formats before they start to really absorb a message that is not of natural interest to them. I confess that issues other than disability take a while to get my attention. I think to myself, "Jeez, now I have to care about that?" when some new news item pops up. Well, that's how the issue of disability comes across to those who don't know from it. So it is up to us to find novel ways to grab some of that precious bandwidth and ultimately get others to care and do something to help.

One of my goals with this blog is to encourage you all to become a little publicly active in your situations, whether you are a parent of a child with a disability or a person with a disability. Or if you grapple with some other thing that draws you to these pages. (An overarching, deeper goal of mine is to encourage and exhort you to be who you are, proudly (whether autie, aspie, mommy, tinker, tailor, soldier, spy, bellydancer...)). The best thing you can do for yourself probably is to find a constructive way to express what goes on in your particular life and relate it to something larger out there. When you find and articulate that connecting point, you stand the chance of opening someone else's eyes and making them think. Causing people to think about something anew and afresh is how you change the world, and God knows, it could use a few tweaks (no offense to God Above but, come on!). Gather with a few other parents and exchange stories; if you have a little more energy, start a group with them. Or write a letter to the editor; call your state rep. Talk about it, make your case special. The act of talking/writing/expressing constructively is cathartic and eye-opening. And we cannot go through this one life we are given with our eyes and mouths shut. There is too much to be done.

If you plant ice, you're gonna harvest wind.
--GFD, Roll Away the Dew

Sometimes even a big guy needs a little nap... Max is putting in a lot of academic hours these days, what with an honors physics final today, and the state's science test (the infamous MCAS) in a week. He came home yesterday and was just kind of hanging out with me, chatting while I finished up making reservations in Colorado(! Thanks to everyone who wrote me with ideas and suggestions and encouragement. We now have an aide who is going with Nat, so there will be an extra level of support. Ned has set me loose with two guidebooks and a map, and I have planned a great trip!)

In this picture, I was telling Max about where we were going to go in Colorado. "Cool," he would answer. Eventually, though, he grew quiet and when I looked up, I saw he was sleeping. I IM'ed Ned (the one person I like IMing with because he never overdoes it and he goes slow) and told him, "Little Little is asleep!" He said to take a picture, so I did. Max didn't even wake up!

When Max visits with me like that it makes my heart beat a little faster. I feel almost lightheaded with happiness that he wants to sit and talk to me. At times like that, it is so unforced and easy, with him just raising topic after topic while I work on my computer. I think perhaps he chooses those times subconsciously because I am not looking at him intently so it is less intense for him.

I guess that when my boys are adults they might look back and say how overly intense Mom was, how super-attached to them I was. Then again, sometimes I worry that I am not attached enough, because I need my space and I take it. Maybe they'll say how uneven Mom was, thank God Dad was so steady! Or maybe they'll think I was a lot of fun to be around, like my family, who are not all that steady in their moods, but mostly a real delight to be around.

But I just am what I am. C'est ca. I work around the boys, I nap in the middle of the living room while they talk and play. But I also just grab them and kiss them whenever I feel like it and they don't seem to mind, or maybe they just think, "Yeah,that's Mom." Benj will say, "Mom, just call me Ben!" (instead of Little B or Beastie) and I'm trying, I really am! Ben is really growing up. Today we had an actual conversation about autism, about who in our lives is and who isn't. He attended long enough for me to explain that there are different types, different levels, and that Nat has it a real lot, and that it is all about how your nerve cells (brain cells, whatever) are taking in information differently. I had the chance to reiterate that Nat is not stupid, as Ben would like to think, but that he has trouble getting out the right words and gets overloaded with stimuli. Ironically, Ben gets extremely upset if we use the wrong word or get a fact wrong or can't guess what he's talking about; but he himself is very careless with words and often not tuned into what we're talking about. I try to use those moments when he is upset with me for that, to hammer the point home that this is how it feels for me! This is how it feels for Nat! Ben's therapist says to use those moments to teach him. We do. But it takes a long time. We're just planting the seeds; someday we'll have a harvest. Provided I don't under-water or over-fertilize.

Trying to build a family where everyone's needs count, where everyone's happy, takes a long time. But it is so worth the effort.

I think that email, I.M., and txt msging are all very satisfying to use in their own way, but they also have their limitations and there is an etiquette involved. The etiquette is different from face-to-face or phone conversations. I am fascinated with various forms of interacting and I wonder what it is that makes the differences.

Take the difference between a driving encounter and a face-to-face encounter. In our cars we are often by ourselves or just a loved one or two, and we feel completely sealed off from others. I think many of us (I am including me, unfortunately) kind of become someone else behind the wheel. I swear a lot more than in real life, for one thing. It seems that being closed off behind metal and glass I feel stronger and safer and yet, at the same time, more defensive and offensive. I assume the worst of people; someone who is going too slow is perhaps doing it to teach me a lesson? Someone who is tailgating me is giving me a message to go faster? I almost never think, "Oh, she is lost, so she is going too slow." Or "He is nearsighted; or has no sense of distance; or he's merely trying to read my bumper sticker." Or is unaware of what he is doing. These days I am so aware of my bitchy driving habits (because my children and husband seem to tense up in the car when I drive) that I am trying harder to breathe, breathe, breathe.

In terms of email and IM, I find I love using email but I hate IM. I hate the intrusive immediacy of IM. You hardly get a chance to collect your thoughts when they have sent yet another under-capitalized message. Sometimes a whole new chain of conversation has started on their end and you're still answering the first. It can get very confusing. Also, if you are silent for a while, they say, "Hello?" which always seems a little sad to me. Sometimes I'm just thinking! But the etiquette is such that you have to say, "hold on..." or something like that.

And how do you end an IM session? Sometimes the other person is deep into their thing with you and you realize Jon Stewart is on or your sweetheart is going up to bed and you absolutely must go to sleep at the same time or one will wake up the other. So many times, the other person is just chock full of I-Mergy and I am trying to break in, the way you can in a normal face-to-face conversation. One person I know was so oversensitive on IM that the minute I paused to think he would say, "Are u there?" And by the way, I also hate the abbreviations. I am too old and cranky to do that kind of stuff, I guess.

Recently Max showed me how to txt in my phone. Now that is really energy/time consuming! But I was having a "conversation" with someone and he stopped in the middle! The next day I asked him what was up and he said he had fallen asleep. In the middle of txting! Not even a gdnght. Is that rude, or is that the nature of txting? I have to ask Max.

GTG

Look at what Max discovered, and Ned just blogged! And we thought we were so good. My big question is, who got to eat it?? What is that fondant stuff, anyway? Why mix in raspberry or orange flavors? Doesn't everyone know that you should not mix fruit with chocolate, it clashes! But still, oh wow, is this genius!!!

All you gotta do to join is to sing it the next time it comes around on the guitar.
--Arlo Guthrie, Alice's Restaurant Massacree

Here is a good letter you all can copy and adapt to whatever situation is going on where you live. The only way to make changes is to make the changes happen. I am not Yogi Berra; this is true. One good way to raise consciousness is to write for your local paper. Raise the issues that piss you off. If you see school officials dissing special education, object. Tell the public instead about all the good special education does. Tell them any positive growth your own child has had because of your town's efforts. Tell them people are not being "overdiagnosed," they are now being picked up before they would otherwise slip through the cracks.

To the Editor:

I hope that there was a different context to [insert elected official or school administrator's name] comments on special education (SPED) costs last meeting. It sounded as if the school department is beating up on special education, and the special needs families feel that as an extra hardship in their lives. What's more, it makes no sense at all legally to imply we are not going to be able to sustain these cost increases much longer. We are legally required to. We are morally required to.

I'd like to see exactly where the SPED money goes as well, all the good it does. But the way it is presented in the budget time and again it is one big category, "Special Education." Special Education is many many things: aides, adapted curricula, speech/language pathologists, reading specialists, learning center teachers, private placements, behavioral specialists, psychologists, excellent programs like [insert program name here], and the list goes on and on. I have been saying for years that what there should be is a presentation of the many different programs in special education and the good they have done. But [so-and-so's] comments made it sound as if the school department resents those programs and their costs. By the way, why not the same breast-beating over the 12-15% increases in healthcare insurance for educators and town workers?

I would suggest that you try to set it right for your constituents and colleagues.

Sincerely [Disappointedly, I'm-Going-To-Run-Against-You-Next-Election],
You, the outraged.

Cape Cod boys they got no sleds, heave away! Heave away!
They go down hills on codfish heads
We are bound for Australia.
--Old Folk Song, I know the Weavers' version

We snuck out at 8:30 last night to beat the Memorial Day traffic. I had the car loaded and ready by the time Max got back from Pirates 3 and our pizza had been digested. We breezed through Boston and the former Big Dig and sailed down 93 to Route 3, and only had some hassles around Duxbury where you lose a lane (the famous Massachusetts-type merge).

No traffic getting onto The Bridge except for a bunch of slow, awed drivers who were searching for their lost rotary (the one Mitt Romney got rid of, his one smart move as former governor). This was probably a lot of people's first time onto The Cape since last summer, and the infamous Sagamore Bridge Rotary is no more.

Got to M & D's house in no time, most of us nodding off inside the lulling car. A little bit of Arab music kept me awake for the final push and we rattled into the screened porch and on into the lovely little house. Nat grinning from ear to ear. Our summer was nearly here.

And this morning, my favorite thing in the whole world: waking up to a shiny blue sky on Cape Cod. I rode bikes with Max, saw the ocean, and got back to eager guys who also needed to get to that beach. Threw together some PB&J for N, M, and B, and tuna for Nat and me, and Ned picked up snax at the Superette.

No lines, and the park ranger let us in free.

So we spent 3 1/2 hours by the sea, even went in because it was so hot -- but the water was frigid! Still, Ben got used to it and played in the waves. I just basked in it all.

And now summer has officially begun.

Benj's third grade teacher was also his second grade teacher. They kept the classs together for two years because they had done so well with her and third grade curriculum was new to her. She is a total youngster, young enough to be my daughter, yet she was a pro from the start. She is very centered, very wise, and a lovely woman, too. Libby is getting married at the end of this school year, so the parents decided to throw her a bridal shower that the kids could be a part of.

I am one of the room parents, so I went with another mom to Tiffany's and we bought her champagne flutes and a crystal apple with the money we had collected from the parents. We also got decorations (a white lace parasol, rose petals, candy kisses, fake gold rings for all the kids!) and we decorated the beautiful cafeteria. That is not an oxymoron. I say "beautiful cafeteria" with all seriousness. The kids' school is the pride of the town, built in the early 1990's to replace a falling down old thing. This whole part of town was renewed because of the school and the dynamo principal who reigned for as many years. It is a gorgeous building, designed by architect Graham Gund to fit in with the 19th century neighborhood, so it is brick, lots of windows, and a slate roof! The cafeteria is a renovated carriage house, also from the 19th century, with long palladian windows all around it. So we were able to make a beautifully decorated place for her, all white streamers and stuff.

The kids were so excited and we all hid and yelled "Surprise" when she came in! Her fiance was also there. We had cake and juice and I wrote a song for her:

Lovely Libby
(sung to the tune of “Lovely Rita,” by The Beatles)



Lovely Libby
Teacher-Made
Where would we be without you?
We gave you our kids
Such things you did with them!

Met her when
They were just tiny
Thought her smile was always shiny
Told her we would really like her to teach them again

Got her for third
We knew we'd made it
Our kids' success was truly fated
Sitting in the classroom with Ms. Brent, too!

Oh, Lovely Libby
Teacher-Made
Nothing can come between us
We move to grade four
We'll always adore -- YOU!!

I think she was very pleased with the whole thing. I know we have been more than pleased with her. She has taken Ben by the hand and gently led him into academic and social success. She understands him, she adores him, and she doesn't take any crap from him, either. I will really miss her when he starts fourth grade and I know deep down in his little tough guy heart, Ben will, too. Good teachers make the world go round.

Do other people feel lucky this time of year? I look out the green-filled window, the trees outlined in early morning sunlight and I feel such a strong sense of wellbeing and possibility. There's a mild, pleasant pressure in my middle which I believe is the physiological expression of anticipation. In other words: yay, spring!

Yesterday was a solidly wonderful day. People say, "When it rains, it pours," and that is so true. Why is it that a day like that is filled with fun and happy surprises, and other days are just such drek? Randomness of the universe? I think that's a pretty inefficient way to run things, myself. If I could advise God, I would tell Him/Her/* that he needs to step in every now and then and set things right, stick to his plan. But perhaps God is a Libra, and also experiences shifts and multiple points of view? The more I think about it, this must be the case, because of the utter beauty of the world, and also the utter chaos and flakiness. And of course, there is the delphinium, which is not only proof that God exists, but that * is deeply steeped in a knowledge of Beauty. (Note to readers: just because I, too, am a Libra, please don't construe that I am becoming manic. It is only that I am most familiar with this sign, it being my own, and thus my construct of God would fit most easily with that, with what is in my own head. We all have to imagine God based on our own minds, to some degree.)

Enuf of dat! I ain't no theologian, for God's sake. I was merely trying to express how taken I am, year after year, with late May. Why is it so lovely? Why? What's the Point? So I figure, the Point is, to make us gasp in delight every so often just that we are alive. We get to see this, we get to live this. Pity the Martians, who have to live on some reddish, rocky thing all year round. Sure, they think it's beautiful. But we know they are wrong. And they are all Aries, by the way. Not that there's anything wrong with that, but it is the opposite of Libra.

I have not flipped my lid, I am just sitting here drinking that coffee of mine, making myself laugh even before my eyes have de-puffed. I am happy for a few reasons, unrelated to the soft green light outside.

First of all, I had a long talk with Dad yesterday, one of our finest in a while, where he did his Dad thing and said stuff like, "This is a golden opportunity for Nat! Wow, how great for him! I'm jealous." And "You guys -- it almost doesn't matter which ruins you see, which town you're in -- you are going to have the time of your life because it will be so different from what you always do!" And "You and Laura also didn't want to do things; we just made you try them and then you were glad you did." He made me laugh and smile and feel strong.

Second, I found an aide to go with Nat to his camp, one of our longtime sitters, a former teacher of his, a very dear girl (well, she is a woman, actually) who loves my kids, zits and all. She is excited to do this, and she will provide us with that extra level of support and that familiar tie to home for Nat.

Third, I taught a bellydance class for the first time. A friend of mine teaches in a local studio and she asked me to round up some friends to do intro to bellydance, so I did. Only three of them came, in the end, but those three were so into it! I had written up a lesson plan and burned a class CD, and so I was fully prepared. All I wanted to do was give them the joy of bellydance, the understanding that this is different from many things we have been exposed to because there is so much body acceptance involved, and a few basic moves. I brought hip scarves and veils and showed them some basic isolations and traveling steps, and also the principal of intro, middle, and end of a dance piece.

We had so much fun. We went out to dinner afterwards, to a local restaurant I have never been to, but have wanted to try. We had drinks and appetizers for dinner, and a really nice time. We were all in our bellydance clothes and even kept on our hipscarves, because they were so excited to be wearing them. There is something magical and empowering about tying one of those around your hips. You automatically feel like a different person, a dancer. Confident, strong, beautiful.

The owner of the studio then asked me to teach a series of classes next time! I am so excited about that. I have been studying this religiously for a year now, which doesn't seem all that long for becoming a teacher, but maybe it is enough for conveying the most important aspects of Raks Sharki, bellydance: there is no right and wrong, only better form. Perhaps God, with all the inconsistencies and ups and downs and startling beauty in the Universe, is also a bellydancer.

Keys to the universe are no-fail items or activities that always, always either do what they are supposed to do or always, always make me happy.

1) Pepto Bismol. When you eat like a freak, the way I do, it's a wonderful thing to have around.
2) Gel nails. They last two weeks and cost the same as a regular manicure.
3) Atkins Endulge chocolate caramel candy bar. Tastes just like a Snickers but is only 2 grams carb. See item #1, however, if you eat more than one!
4) Fage yogurt. It tastes like sour cream (mmmmmmm) but is no fat and only 3 grams carb. a serving. You get it at Trader Joe's.
5) Putting on belly dance costumes.
6) Book contracts.
7) My push lawn mower. Works great, needs no stupid gas, and my boys can mow the lawn with it without injury, knock wood.
8) Working out with R. Always full of laffs and gozz about town politics.
9) The Middle East in Cambridge, of course.
10) Catmint and sedum. They grow anywhere and look pretty.
11) Kissing any one of the following faces: Nat, Max, Ben.
12) Helping a parent whose kid is newly diagnosed figure things out
13) Realizing my children have good senses of humor
14) Ned's poetry (it is rare but it is incredible)

I am feeling a little better today. I appreciated all the comments on my previous post, encouraging me to go ahead with our original plan, and one person, I think is was Em's Mom (lucky Em!) suggested I send an aide along with Natty Boy/Man. So I'm asking his teachers, but of course that would mean they would have to take off a week of work. D'oh. I need to find some good respite types again, since I am no longer relying on Mr. Maxi Million, who got so spooked last time.

It's just that I am not thrilled with the Colorado thing, either. I don't want to offend anyone, it's just that it's not my favorite culture. Although I love, love, love the Laura Ingalls Wilder books, and read them something like four times, including once to Max. I love the clothes of the West, the bustiers and the cowboy hats and boots, and I love horseback riding. But -- when I look for places to stay, for the most part they are unexciting kinds of motel 8. I want a gorgeous resort so that I can feel pampered, and I want Max to have WiFi. Does anyone know of beautiful places to stay in the towns of Salida, Pueblo, and Durango? Aspen was not a problem; it was too expensive, in fact!

(There's no pleasing me. I want things "just in the middle," Do you know that joke? All I remember is the punchline: "Lady, kiss my *ss. Not too much to the left, not too much to the right, but Just In The Middle!")

What I really, really want to do is take the boys to Greece, to Santorini, that amazing place with the white buildings going up the mountain and the blue sky and the Aegean Sea. But -- not this year, I guess.


Seriously, I welcome suggestions of things to do, but only in Colorado. I do not want to stray further than 4 hours from Nat during that week, aide or not. Oh, Sweet Guy!!!!!!!

Also, no more advice on how I need to let go and let him breathe, my dears. I will NOT be doing that any time soon. That is my hardest life lesson: letting go. And that boy is very, very tenacious. And I'm a Jewish Mama!!!

***********TOTAL BLOG SUBJECT DISCONNECT****************************

I love Wednesdays because there is a lot of bellydance. I have the morning class at my gym, with a young and lithe teacher; and my evening class with my original teacher and my new bellydance buddy, L. L is like a dream come true. She is tall, gorgeous, about the same level as me at bellydance, she has a kid and is nearly my age. She is kind, openhearted, generous, and lots of fun. So I am totally psyched for class tonight and the Middle East afterwards with L and another dancer we know. I could use the break from planning this trip!

This post was poorly written and perhaps kind of idiotic. I apologize.

I spent a few hours poring over my guidebooks but the thing is I am just not psyched. My heart isn't in it. I guess it is because of Nat, mostly; not knowing how he will feel about our leaving him in camp. If he is sad about it, I can't bear it. I could write the mother of all Nat books, which Ned said to me as I drifted off to sleep last night. But what if it doesn't help? What about the unforeseen outburst over not knowing where his dirty socks should go, or if he's afraid at night but doesn't know how to say it so he just yells. ARGH. You sign on for motherhood, thinking only of plump rosy babies and dirty diapers, and you never realize how much more it is. It's language-impaired teenagers who are lonely but don't realize it. It's not knowing how much more your boy wants out of life, but just kind of resigns himself to a vaguely painful existence. I am not complaining, I am observing. Well, maybe I'm bemoaning.

And then there's the rest of it. I began to get excited because I found a place called Comanche National Grasslands, a park in Southeastern Colorado where there are huge dinosaur footprints, and you can't even get to them unless you are on foot or on horseback. So I figured we'd ride! But Max and Ben don't want to.

They do want to go to Mesa Verde, but I've been there two or three times. I guess the thing is I am not that excited about mountainous vistas, rivers, lakes, tall pines, etc. I'm a beach girl. I love the ocean.

Nat loves the ocean, too.

So why am I sending him to a camp way the heck out there away from everything he's ever known and loved?

Maybe I won't do it.

Me and my uncle went ridin' down,
South Colorado, West Texas bound.
We stopped over in Santa Fe,
That bein' the point just about half way,
And you know it was the hottest part of the day.
--The Dead, Me and My Uncle

I am beginning to plan our trip out West. I am so overwhelmed right now, sitting here with turkey lo carb rollup dripping avocado, two new guidebooks and a map, Precious with four windows open to different resorts and flight schedules and Natty's camp. I can't believe we're doing this: sending Nat to a week of overnight camp in Colorado, and the four of us going off on a venture in the Wild West.

I've been to the West; as a girl my parents took Laura and me cross-country camping four different summers until our adolescent needs demanded that they take us to the beaches of Cape Cod instead. We would drive like mad through the mid-Atlantic states and the midwest, our destination the mountains. We camped in the Rockies; Grand Tetons, Wyoming; Mesa Verde; Badlands, South Dakota; all the way to California (northern only); Washington (Mount Olympic State Park); and Oregon (Crater Lake).

I haven't taken my boys on such trips for many reasons. But now the opportunity has come up to do something with a lot of transitions and unfamiliar things (stuff Natty would probably not like, but the other two would). But, oh, a part of me is so sad that Nat won't be with us! I worry that he will miss us too much and not have fun. I know in my head it is good for him to be away from us and have that experience. It is a phenomenal camp with all kinds of outdoor/exciting activities and just the right attitude towards The Spectrum. But, still. A vacation without Nat??!! Why must everything wonderful be mixed with a little pain?

I am trying to stay focused on the joyful part, but being me, that is not always possible. That's why, after a really rough mowing of the lawn (with my push mower that really does not cut very well) I treated myself to new guidebooks from my favorite bookstore and then a latte at my favorite coffee shop. I have mapped out a tentative itinerary, which involves staying in a new place just about every night. This is not what Ned wants to do; he wants to have one place that is our base and take day trips. But I don't think that is really possible out West. Everything is so spaced out! Everything is miles and miles away from everything else!!! Here, you drive 150 miles and you are practically to New York. Another 150, Philadelphia, and another 150, DC. There, you can get maybe from Aspen to Telluride in three hours. One state!

So I am thinking like Max and Ben, wondering what kind of activities they will love. Not too much mountain hiking or biking; I'm thinking they'd like the Southwestern part of the state better, with Indian culture and sand dunes, etc. Dip into New Mexico? Maybe take a whitewater raft trip. No camping, thank you very much. I did that as a kid and it is so over. Can you imagine me in a campsite now? Right. Although, if Beastie told me he wanted to do it, I would...

It is all so daunting, especially the part about having fun without Nat. :-( :-) ??

I heard from my agent!

It is all good. A little more back-and-forth with the editor, no problem. Minor stuff.

Second Book is about to begin. OMG!!!




*pun thanks to Neddy Sweets

Got into an interesting discussion with Max yesterday, about South African amputee runner Oscar Pistorius. Pistorius is aiming to get into the 2008 Summer Olympics in Beijing, even though the IAAF (International Association of Athletics Federations) is seeking to ban him because of his prosthetic super legs. They are actually just well-made prosthetics, that he has learned how to master to a great effect. His time is already at the level of Olympic women runners. He is very close to the men's records. Dose Bastards, as my grandma would have said. The Body Impolitic is a blog I love to read, and they present a very good discussion of this topic, the concept of what is natural and what is normal.

Max's opinion was that the IAAF needed to have standards of what sort of prostheses were kosher in the Olympics. He thought that Pistorius' legs should be allowed, but that there was this new Japanese exoskeleton product that was so powerful that it would make someone into kind of a superman were they to adapt it to one's legs, and so something like that should be banned. We talked about chemical enhancements as well: steroids versus SSRIs. What if, I aksed, someone took an SSRI to brighten their mood so that they could perform really at their best? Is that different from taking a steroid? What about the beauty contestant who uses surgery to enhance her natural appearance? Should that be allowed? Where do you draw the line? False eyelashes vs. false breasts? Hair extensions? Makeup?

Of course I started to think about other disabilities and how they were or were not accommodated. Why is it that the law requires the construction of ramps so that physical disabled people can get into places and participate in activities, but there is no requirement to provide Nat with an aide so that he can participate in activities? I have often chafed at the sign that says, "handicap accessible," in a movie theatre because I feel that, NO, it is NOT accessible to Natty, who needs to make noise to feel comfortable but would be scorned were he to do that in a theatre.

Where do I start in fixing this unfair, mixed-up world of ours?

I thoroughly enjoyed the Cape today. The sky was steely gray when I left Boston, but as I passed the South Shore, the sun started to break through, and the temperature rose. By the time I got to the Orleans rotary it looked like a pretty nice day, albeit in the 50's. So what, I had a sweater and my boots. I blasted Sticky Fingers, playing Sister Morphine two times in a row. That is an incredible song. The way the chords suddenly brighten with Mick's swelling voice...! Heaven. Then I listened to Natacha Atlas' I Put A Spell On You, which my friend Sandy ripped for me. I am thinking that this will be my debut performance song.

Drove up the driveway, hugs all around, looked at the gardens' progress (I pretty much dug and planned and planted all of the gardens around the house. It's a pretty little cedar-shingled Cape house, (what else?) a 3 bedroom with a screened in porch. There's a cathedral ceiling and skylights inside, so it is very light and airy. They are a mile from the ocean, and it always smells salty and you can hear its dull roar in the background.) Lunch was pita roll ups with ham, avocado, and cheese. Then we got to work with the porch furniture. Mom and I hauled it all upstairs and Dad did the lighter stuff, claiming later he felt "emasculated" by that. His back hurts, so he could not do the work.

Then Mom and I went clothes shopping in Orleans at these cute little stores, If the Shoe Fits, and Karol Richardson. She surprised me by buying me a stretch brown lace top! And then she bought herself an orchid colored linen sweater; just gorgeous. We debated about handbags, and had a lot of fun sighing over organza, ruffles, linens, and beads.

Went back to get Dad and drove to the National Seashore. The erosion was bad this year; the entire beach staircase had been washed away and some of the dunes. So they had rebuilt the staircase and it is very different. I kept thinking, "What will Nat say? And Max? Both of them hate change like this, in places they've been coming to for years and years!" I remember Nat repeating, when he was very little, so as to comfort himself, "It's a different that's okay." Kind of summing it all up. Oh, Sweet Guy!!!!

It was very cold so we then drove to the bay. Warmer, but not as interesting. I'm like Nat, who when he saw the ocean for the first time in his life kept repeating, "Ocean!" The word Ocean suddenly got filtered into all the silly talk! I totally relate. There is nothing like that vast, swirling, crashing, thrashing monstrous body of water. Nothing. It is the most powerful thing we've got.

Then we drove back, and I wanted to sleep, but I knew I wouldn't. I need to nap with my kids around me, making noise. Somehow, their sounds and movements comfort and lull me at 4 pm., rather than keep me awake. The Cape house is too quiet for naps.

We had an early dinner at this nice place in Orleans, but I have a bit of an upset stomach from the seafood cakes (crabmeat? it makes Mom sick). Dad is so funny, and cute with his wild Einstein-like gray hair. Hard to believe that when he was my age, I had already graduated from college! But look, I do have a seventeen-year-old, so...

My drive home was uneventful. Lots of loud music, and me, impatient to get home to my guys. Nice to get away, nice to help my parents and be with them, and then, it's even nicer to come home.

A lovely day. Not weatherwise, but moodwise. (Long ago I learned that grammar-wise is actually poor grammar. I can tell by the little red underlines that have appeared here on my screen as I write. You are really supposed to say "grammatically" or "according to the weather," "with regard to my mood," but screw it.) A lovely day because I had a lovely evening and because I feel like I am getting somewhere in terms of my own state of mind (or, mind-wise) and vis a vis Nat (Nat-wise).

It is no secret that this past six months or so I have been pulled downwards by depression. The wonderful thing is, the more you talk about this stuff, the more you learn. This is true about most things we suffer from. We should not keep misery to ourselves. I don't mean that we should complain, complain, complain, or air your dirty laundry everywhere all the time. I mean, find some safe outlets for conversation so that you can both learn and help with these problems. I found out that one of my oldest friends, who no longer lives in Boston, and is a little older than me, had been going through the same thing. Likewise, my sister. All three of us explored this, with doctors (I saw a new specialist the other day) and others, and have concluded that there is something definitely hormonal going on, being that we are all in our mid to late forties. Perimenopause is not nearly as researched as it ought to be, but apparently a study showed that treating it with SSRIs like Prozac was even more or equally helpful as hormonal replacement therapy (which can have side effects, unlike Prozac, whose main side effects for me have been a recurring dream about a city. This place is both wonderful and terrifying. There are different parts I go to. My favorite part is the old Paris-Cambridge-South Street Philadelphia-like section. There are amazing vintage clothing shops there. My least favorite part is the scary train you have to take there, and the really poor, bad neighborhood -- a little like West Philly, where I lived during college and year one of marriage to King Edward, Neddy The Sweet).

So I am going to get my thyroid and other things tested. Meanwhile, I have been pursuing thoughts about Nat with our psychiatrist, and we now have a steady plan for him, which mostly involves studying him on Resperadone at a higher dose, which has had good results in certain studies. He is still on a very low dose, so it is okay to increase it a bit. Although he is a tiny bit less explosive than he's been, he seemed so unhappy yesterday, so bothered by things beyond his control. The stupid streetlight would not go on, the sun would not come out, Ned was late, he couldn't see the pepper. So many things make him feel bad, he seems so at a loss for getting a handle on his surroundings. How do I explain to him that we have to let go of such things, when I, too, have a problem with letting go? I understand all too well how it feels to wish for more control over my world and what others are doing, but not to be able to accomplish that. In that way, the Twelve Steppers have a point: God grant me the ability to let go of the things I can't control, the courage to change the things I can, and the wisdom to know the difference. Something like that. A good mantra for us all.

But why is it a lovely day, you might still be wondering, a propos to my lede (or, lede-wise)? Because I have begun a 5-week session with my original bellydance teacher; this is a class that my new friend L organized. Last night it was wonderful being back with that teacher, and going wild with her and just two other women, total freestyle while she inserted ideas here and there, and taught us a bit about zill rhythms. After that, L and I went to the Middle East for a drink and saw a bunch of friends there, as well as a great dance show.

And today I am seeing my parents, to help them set up their Cape house. It is total crap weather, classic New England Raw, but I am very psyched to spend the afternoon with M & D and maybe do some gardening there and get a good meal out of the deal. Family-wise, a good day.

i thank You God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes...
--e.e. cummings

So here's what I'm grateful for:
1) A roof, though it needs work, over my head
2) That it is deep spring
3) A handsome husband who loves me and lusts me
4) Healthy sons
5) Living parents
6) Sister who is a friend
7) Three new friends in the past few months: W, L, M
8) Very old friends, too who are still in touch with me
9) My liberal town and ultra-lib and fun Cambridge right nearby
10) Israel
11) Resperdone and Prozac
12) My therapist
13) Gel nails
14) Comedians: Phil Hartmann, Jerry Seinfeld, Darryl Hammond, Will Ferrell, Brian Regan, Dane Cook
15) Hewlett Packard + brainy husband
16) Belly dance
17) Benji's teacher
18) Nat's school
19) the IDEA
20) that the Democrats control Congress

1) Boston Globe trying to be like New York Times but not managing it because Boston is not New York. We are not New York and that's okay!
2) Self-consciousness (as opposed to self-awareness)
3) Losing weight in areas that don't need to lose weight; not losing weight in areas that do.
4) Bellowing children
5) Not being able to figure out what makes children bellow
6) Being bored at the gym
7) Stupid heel-dragging editors
8) Roof repair
9) Having to listen to the roof repair man talk endlessly about roofing
10) Uncertainty
11) When my hair looks great but I really have to work out -- and thus ruin the do
12) People who don't RSVP
13) Realizing that I don't RSVP sometimes, either
14) Discovering a bug (in the house) that reminds me of a baby cockroach
15) People who don't click on the Tabblo and then thank me for sending it to them. Lies!!!
16) Not being able to lie in the sun because it's bad for me
17) Ned will not buy a new car, and his is 13 years old
18) Kid birthday parties that are held in a faraway place
19) Meaningless lists that don't even go up to 20

The Sunday Times Style section packed a wallop yesterday. They ran a front page story on people with disabilities whose attitude is basically, "You don't like it, lump it!" And they go clubbing with their prosthetic legs, etc. They are changing what the public sees and experiences with disability. The more familiar people are with very different types, the better off we all are. We need the familiarity in order to move away from initial contempt some of us might feel when presented with disability and difference.

The other bit of wonder produced by the NYTimes was the Modern Love piece on journalist Elizabeth Fitzsimons' first taste of motherhood, which I paste in for you below. I wish I had written it myself, but having a loving friend email it to me on Mother's Day because it reminded her of me is the next best thing. I love Fitzsimons' attitude of wholehearted, fearful, yet unconditional love for her disabled adopted Chinese daughter. The cautionary message of the piece is also clear: be careful of doctors' dire predictions. You never really know what a well-loved, educated, and nurtured child might be capable of and you damned well better never say never when you are dealing with human beings.

May 13, 2007
Modern Love

My First Lesson in Motherhood
By ELIZABETH FITZSIMONS
I SAW the scar the first time I changed Natalie’s diaper, just an hour after the orphanage director handed her to me in a hotel banquet room in Nanchang, a provincial capital in southeastern China.
Despite the high heat and humidity, her caretakers had dressed her in two layers, and when I peeled back her sweaty clothes I found the worst diaper rash I’d ever seen, and a two-inch scar at the base of her spine cutting through the red bumps and peeling skin.
The next day, when the Chinese government would complete the adoption, also was Natalie’s first birthday. We had a party for her that night, attended by families we’d met and representatives of the adoption agency, and Natalie licked cake frosting from my finger. But we worried about a rattle in her chest, and there was the scar, so afterward my husband, Matt, asked our adoption agency to send the doctor.
We had other concerns, too. Natalie was thin and pale and couldn’t sit up or hold a bottle. She had only two teeth, barely any hair and wouldn’t smile. But I had anticipated such things. My sister and two brothers were adopted from Nicaragua, the boys as infants, and when they came home they were smelly, scabies-covered diarrhea machines who could barely hold their heads up. Yet those problems soon disappeared.
I believed Natalie would be fine, too. There was clearly a light on behind those big dark eyes. She rested her head against my chest in the baby carrier and would stare up at my face, her lips parting as she leaned back, as if she knew she was now safe.
She would be our first child. We had set our hearts on adopting a baby girl from China years before, when I was reporting a newspaper story about a local mayor’s return home with her new Chinese daughter. Adopting would come later, we thought. After I became pregnant.
But I didn’t become pregnant. And after two years of trying, I was tired of feeling hopeless, of trudging down this path not knowing how it would end. I did know, however, how adopting would end: with a baby.
So we’d go to China first and then try to have a biological child. We embarked on a process, lasting months, of preparing our application and opening our life to scrutiny until one day we had a picture of our daughter on our refrigerator. Fourteen months after deciding to adopt, we were in China.
And now we were in a hotel room with a Chinese doctor, an older man who spoke broken English. After listening to Natalie’s chest, he said she had bronchitis. Then he turned her over and looked at her scar.
Frowning, he asked for a cotton swab and soap. He coated an end in soap and probed her sphincter, which he then said was “loose.” He suspected she’d had a tumor removed and wondered aloud if she had spina bifida before finally saying that she would need to be seen at the hospital.
TWO taxis took us all there, and as we waited to hear news, I tried to think positive thoughts: of the room we had painted for Natalie in light yellow and the crib with Winnie the Pooh sheets. But my mind shifted when I saw one of the women from the agency in a heated exchange in Chinese with the doctors, then with someone on her cellphone. We pleaded with her for information.
“It’s not good,” she said.
A CT scan confirmed that there had been a tumor that someone, somewhere, had removed. It had been a sloppy job; nerves were damaged, and as Natalie grew her condition would worsen, eventually leaving her paralyzed from the waist down. Control over her bladder and bowels would go, too; this had already begun, as indicated by her loose sphincter. Yes, she had a form of spina bifida, as well as a cyst on her spine.
I looked at my husband in shock, waiting for him to tell me that I had misunderstood everything. But he only shook his head.
I held on to him and cried into his chest, angry that creating a family seemed so impossible for us, and that life had already been so difficult for Natalie.
Back at the hotel, we hounded the women from the agency: Why wasn’t this in her medical report? How could a scar that size not be noticed? It was two inches long, for God’s sake.
They shook their heads. Shrugged. Apologized.
And then they offered a way to make it better.
“In cases like these, we can make a rematch with another baby,” the one in charge said. The rest of the process would be expedited, and we would go home on schedule. We would simply leave with a different girl.
Months before, we had been presented with forms asking which disabilities would be acceptable in a prospective adoptee — what, in other words, did we think we could handle: H.I.V., hepatitis, blindness? We checked off a few mild problems that we knew could be swiftly corrected with proper medical care. As Matt had written on our application: “This will be our first child, and we feel we would need more experience to handle anything more serious.”
Now we faced surgeries, wheelchairs, colostomy bags. I envisioned our home in San Diego with ramps leading to the doors. I saw our lives as being utterly devoted to her care. How would we ever manage?
Yet how could we leave her? Had I given birth to a child with these conditions, I wouldn’t have left her in the hospital. Though a friend would later say, “Well, that’s different,” it wasn’t to me.
I pictured myself boarding the plane with some faceless replacement child and then explaining to friends and family that she wasn’t Natalie, that we had left Natalie in China because she was too damaged, that the deal had been a healthy baby and she wasn’t.
How would I face myself? How would I ever forget? I would always wonder what happened to Natalie.
I knew this was my test, my life’s worth distilled into a moment. I was shaking my head “No” before they finished explaining. We didn’t want another baby, I told them. We wanted our baby, the one sleeping right over there. “She’s our daughter,” I said. “We love her.”
Matt, who had been sitting on the bed, lifted his glasses, and, wiping the tears from his eyes, nodded in agreement.
Yet we had a long, fraught night ahead, wondering how we would possibly cope. I called my mother in tears and told her the news.
There was a long pause. “Oh, honey.”
I sobbed.
She waited until I’d caught my breath. “It would be O.K. if you came home without her.”
“Why are you saying that?”
“I just wanted to absolve you. What do you want to do?”
“I want to take my baby and get out of here,” I said.
“Good,” my mother said. “Then that’s what you should do.”
In the morning, bleary-eyed and aching, we decided we would be happy with our decision. And we did feel happy. We told ourselves that excellent medical care might mitigate some of her worst afflictions. It was the best we could hope for.
But within two days of returning to San Diego — before we had even been able to take her to the pediatrician — things took yet another alarming turn.
While eating dinner in her highchair, Natalie had a seizure — her head fell forward then snapped back, her eyes rolled and her legs and arms shot out ramrod straight. I pulled her from the highchair, handed her to Matt and called 911.
When the paramedics arrived, Natalie was alert and stable, but then she suffered a second seizure in the emergency room. We told the doctors what we had learned in China, and they ordered a CT scan of her brain.
Hours later, one of the emergency room doctors pulled up a chair and said gravely, “You must know something is wrong with her brain, right?”
We stared at her. Something was wrong with her brain, too, in addition to everything else?
“Well,” she told us, “Natalie’s brain is atrophic.”
I fished into my purse for a pen as she compared Natalie’s condition to Down syndrome, saying that a loving home can make all the difference. It was clear, she added, that we had that kind of home.
She left us, and I cradled Natalie, who was knocked out from seizure medicine. Her mouth was open, and I leaned down, breathing in her sweet breath that smelled like soy formula.
Would we ever be able to speak to each other? Would she tell me her secrets? Laugh with me?
Whatever the case, I would love her and she would know it. And that would have to be enough. I thanked God we hadn’t left her.
She was admitted to the hospital, where we spent a fitful night at her bedside. In the morning, the chief of neurosurgery came in. When we asked him for news, he said, “It’s easier if I show you.”
In the radiology department screening room, pointing at the CT scan, he told us the emergency room doctor had erred; Natalie’s brain wasn’t atrophic. She was weak and had fallen behind developmentally, but she had hand-eye coordination and had watched him intently as he examined her. He’d need an M.R.I. for a better diagnosis. We asked him to take images of Natalie’s spine, too.
He returned with more remarkable news. The M.R.I. ruled out the brain syndromes he was worried about. And nothing was wrong with Natalie’s spine. She did not have spina bifida. She would not become paralyzed. He couldn’t believe anyone could make such a diagnosis from the poor quality of the Chinese CT film. He conceded there probably had been a tumor, and that would need to be monitored, but she might be fine. The next year would tell.
There would be other scares, more seizures and much physical therapy to teach her to sit, crawl and walk. She took her first steps one day on the beach at 21 months, her belly full of fish tacos.
NOW she is nearly 3, with thick brown hair, gleaming teeth and twinkling eyes. She takes swimming lessons, goes to day care and insists on wearing flowered sandals to dance. I say to her, “Ohhhh, Natalie,” and she answers, “Ohhhh, Mama.” And I blink back happy tears.
Sometimes when I’m rocking her to sleep, I lean down and breathe in her breath, which now smells of bubble-gum toothpaste and the dinner I cooked for her while she sat in her highchair singing to the dog. And I am amazed that this little girl is mine.
It’s tempting to think that our decision was validated by the fact that everything turned out O.K. But for me that’s not the point. Our decision was right because she was our daughter and we loved her. We would not have chosen the burdens we anticipated, and in fact we declared upfront our inability to handle such burdens. But we are stronger than we thought.

Elizabeth Fitzsimons, who lives in San Diego, is a reporter for The San Diego Union-Tribune.

Nat had an appointment yesterday morning with a pediatric ophthalmologist at the recommendation of his pediatrician. Our pediatrician is very dear to me. She is kind of a sister hen -- being too young to be a mother hen -- very thorough, always coming up with things I should have done to them. You can never get out of her office without a referral for something else in your hand. This is good and bad. On one hand, I feel like nothing about my children's health gets overlooked. On the other hand, I feel like, enough with the extra appointments already!

I especially love the way she treats Nat. She seems completely at ease with him and also delighted with him, always impressed by his growth and development. She is this way with Max and Ben, too, but when people get Nat, it is an extra special gift to me. (I'll let you all in on a big secret: he's just a goofy, pain-in-the-ass teenager. He is difficult to figure out, but then again, so is my other goofy, not-a-pain-in-the-ass teenager. They are what they are, as Popeye would have said. And he should know: don't you think his mumbly chit-chat was a bit familiar...? A bit self-stimulatory? Has anyone thought about cartoon characters who may have been autistic? Was Jughead an Aspie. for instance? You could make an argument that both Charlie Brown and Linus were autistic, the former with his difficulty understanding NT relationships, his perseveration over kicking a non-stable football; and Linus perhaps was a savant, with his ability to memorize long Bible passages as a kindergartener, his unusual instincts and Grandin-like connection with animals -- he could pat birds on the head. And Lucy totally bullied them, the beeyotch. Where the hell were their parents, "wa-wa-wa-wa-wa-wa"?)

Where was I? Okay, the doctors. (shit, I just got coffee on Precious, my laptop, amazing what she will put up with) So Dr. R, the ped, told me I should take Nat to Dr. B, the eye specialist, to get his eyes checked. I didn't question this; I do not know what an eye exam for a kid is like, and I admit I hardly ever get my own eyes checked. Ned calls me "Squinty." But the eye docs always say I don't really need them -- yet! So why should I get them? I don't really have crows' feet yet --

Argh, tough to focus. But that's good, because it means I'm happy and brimming with things to say. I am typing in my summer PJs on the screened porch, slurping perfect coffee, looking out at a rabbit who actually let me get within 5 feet of him to snap a few photos, and anticipating Mother's Day and Dad's 70th birthday. Going down this afternoon to see my fambly and celebrate, M, D, seeyster, kiddos.

And here is the greatest news: Nat seems so much his old self. He is talkative, smiley, and calm. He has been able to tell me things he doesn't like, or would like, such as for me to keep the doors closed (this is a protracted back-and-forth we have, because I want the doors open in the spring and summer, and he feels that doors are best when they are closed. So I am trying to get him to adapt to open doors sometimes -- Nat's least favorite word, too wishy-washy -- and me to adapt to closed doors more than I would like.) Why is he feeling okay again? Not entirely sure, but getting the Luvox out of his system is probably helping, as well as our renewed use of Social Stories, and our redoubled efforts to think ahead and let him in on what is going to happen, and to be sensitive to his likes and dislikes. As well as his own cycles (?) which are similar to mine. We are, as I've said before, very connected. He is very in tune with me.

(Just moved indoors to the window seat because I had to plug in and it got cloudy. Precious needs a new battery; I get like 45 minutes and then she totally peters out. Ben is playing Kingdom Hearts and Nat is watching. I hope it clears up because Ned and Max are going to Fenway Park with Ned's Dad and stepmom at 1. I am getting us ready to go to Connecticut and I really want good weather for them and for us tomorrow. We'll probably play wiffle ball and hide and seek. I already told Nat this in his social story, so we really have to do it!)

Ah yes, the pediatric ophthalmologist. Do you get the feeling that that is not what I was meant to write about today? But I want to say that sometimes well-meaning docs make things harder than they need to be. I took Nat to this specialist thinking that the eye exam would be something we need a special person to conduct, but it turned out that Nat didn't need that at all.

First of all, I wrote a small description of what Nat could expect from the office visit. These days, with Nat being so routine-conscious, I now find that going back to social stories really helps him feel better about whatever he does. So I wrote stuff like, "The doctor will put drops in my eyes. They will feel funny but soon they will feel okay. It will not hurt."

No eye drops! And the nurse had him read an eye chart, and he shouted out all the letters, first trying to make them into words, which was very sweet. (C A V he read, "cave!") The nurse, of course, loved him.

Then the doc came in and opened a drawer of toys, (superheroes, little piggies, etc.) figuring this would engage Nat's interest and she could examine his tracking ability, etc. But the thing is, he has never enjoyed toys, other than Floppy Bunny. She kept asking him questions about the toys, in a little-kid voice that must work well on her usual patients. But for Nat, the questions were a huge distraction and cause for anxiety. I didn't know what she was after, so I didn't interrupt. I liked the way she was gentle with him and I know he did, too.

Then she switched on a button which caused a mechanical elephant across the room to go crazy. This was to make him look far away. But Nat was startled. I thought, "Oh my God, she is in the Pinching Zone!" But Nat was fine. I was relieved when it was over, and I realized that we would have done much better just telling him to look here or look there, rather than relying on the childlike distractions that work for other children. She could have just as easily asked him to read a Shakespearean passage; he would have done it and she could have tracked his eyes that way. He is much more familiar and at ease with reading than at talking about action figures.

I felt a little pissed, I must admit. I know she is a kind, skilled doctor, and I appreciate how she and the pediatrician were trying to help Nat. But I feel that there was no real cause to treat Nat with kid gloves, so to speak just because he is autistic. All they had to do was tell us what to expect and what they were looking for, and we would have done it. He's autistic, not five. And he and I are a pretty good team most of the time.

Workin' on the night moves
Tryin' to lose them awkward [midlife] blues
Workin' on the night moves
In the summertime
Sweet summertime.
--Bob Seger, with a little help from me

A new experience tonight. I wanted to extend the day, it was just so beautiful. I needed to be outside. I craved that warm night air. And I wanted to dance. The zills were in my head again. It's been a while since they were really in my head.

So Ned said I should dance outside. Isn't that kinda crazy? I asked. No, it's not, said Ned. He keeps urging me to find what's fun and just do it. What will the neighbors think? I said. What will they think? he asked. Who cares? I could feel it surging up inside me, a forbidden thing that I really wanted to do, like skinny dipping. I've only done that a few times, and that is not enough in one lifetime.

So I danced outside, under the stars. I took a pink veil and a red hipscarf, and tied it around my shorts. I had my zills, and the iPod, and just let the music move me. Sometimes a breeze would lift my veil and carry it behind me. There were faint scents of blossoms because the night air was warm and moist. I was flying, spinning, swaying, and my fingers were clicking away like little crickets. I felt light and lifted, like the air itself, dark and mysterious. I felt like a gypsy girl, wild and free. Breathless, exhilarated, awed. Happy.

Here is my column from this week's Brookline Tab.

The light outside is pale green because of all of the green everywhere. So much so that the bits of light blue sky that filter through the branches almost clash with it, to my eyes. The sunlight lately seems eerily bright, absurdly strong. More and more I wonder if this is my perception, or does everyone notice this. Perception is a strange, subjective thing. We never know just what it is like for another person.

This difficult phase with Nat sheds new light on former, similar phases. I feel very certain now that the last time we were "under siege" this much was due to the SSRI he was taking, and the school program's lack of response to his escalating activation. Back then Nat was on Zoloft; now he has been on Luvox. On the one hand, these SSRIs create more neural pathways and connect information together in his brain, helping him take in more information in a way that is more useful for him (or so I imagine, based on conversations with his psychpharmocologist). On the other hand, Nat is still Nat, and he still has an autistic perception of stimuli. I do not say this pejoratively; I mean that his brain makeup is ultimately different from mine and perhaps even if he can take more information in, he may not know how to process it or make sense of it. I don't know what he does with it. He does not know what to do sometimes with all the information he is taking in -- or so we believe -- and he becomes frustrated and reverts to screaming and arm-biting.

The bottom line is, I don't know why. I don't know what it is like for Nat and neither does anyone else. We experiment but we don't know. And the doctor thinks now that the Luvox is "overactivating" Nat. So we have taken him off it. I feel very chastened by this. Even though we were being so cautious, there was a downside and Nat and the rest of us have paid the price.

Up until yesterday morning, when Nat had a meltdown while Max was in charge (we were at Ben's parent-teacher conference at Ben's school), I was willing to put up with Nat's SSRI-driven outbursts because the positive side was that he was more engaged with all of us. But now I feel: at what cost? It was terrifying for Max, it has been terrifying for Ben, and now I wonder if it has been terrifying for Nat. Ouch, ouch, ouch. I can't imagine his pain, feeling so overwhelmed and out of control that he would scream like that and bite himself. Having no way of getting whatever it is to stop.

Sometimes even the clear, bright sunlight is just too much for our eyes. And it does make me wonder how if you tamper too much with the way something is naturally -- like the environment or someone's neurological or chemical makeup -- you sometimes end up worse off.

Today the glory of life shone upon her
She did not know how or why
She decided to take a run in his honor
To move between flashes of wind and sky

He could not run today, because of his eyes
Not his legs. He takes such good care
But you can't control everything, he starts to realize
And at 70, you don't even dare.

She wants to ask him, are you okay. Are you scared?
It's not something you really can do.
So she will run with him sometime, a Cape morning shared
The hot sun, the flat road, and they two.

It all went well from start to finish. The moonbounce arrived when I came back from the gym, around 10, and it looked great, a huge monument to sports, with every kind of ball perched on top, sports cartoons decorating the sides, and a big inflatable scoreboard (home was winning, of course). Perfect for our family, eh? But Ben said, "Well the sports thing will attract more kids, though." Little B!

And so it did. All told, we had around 10 boys at the party. The sun did come out, although it gave no warmth at all. But that did not matter: there was plenty of warmth from all the happy people there.

You don't need a weatherman
To know which way the wind blows.
--BD, (which, happily, also stands for "Bellydance." )

This is why I don't pay attention to weathermen.
All week I checked the little pun-laden upper right hand corner of the Globe to "make sure" that Sunday, the day of B's moonbounce party, would be sunny. All week: "Sunday, mostly sunny, cooler." Cooler sucks, but mostly sunny, Yay! Anyway, I never really pay attention to weather reports because I grew up in New England (and on a deeper level I don't feel that anything really is what it says or stays the same, though I badly want it to). "You don't like the weather? Wait five minutes! Hee Hee." PUNCH

Oh Little B!!!! Can't you get a break???? What is with these huge, wrath-of-God, Dorothy clouds???

Yesterday the morning was another difficult one for Nat (and Ben). At around 11 four of us wanted to be either cutting a keyblade for Max's Kingdom Hearts costume, or pulling out the myriad maple seedlings that bloomed overnight in the yard. One of us wanted everyone inside, eating lunch, because that was "next," the ambiguous kind of next. So Nat spent a half hour bellowing/howling/screaming/stomping and basically scaring the hell out of Ben. I kept saying, "Ben, it's okay! He's just loud. I am here. You can still do what you want," but Ben wasn't buying it. He looked at me and then ran down the basement stairs, where he then yelled at Max and Ned to come inside because, "Nat's flipping out again!"

Oy, God.

I keep thinking, "WWLD?" What Would Lovaas Do? Because that is my basic training. I do not believe that tantrums should be rewarded. I understand and believe with all my heart that you must look for positive occurrences and reward those. You reward when the not-happening of bad "undesirable" things is happening.

And this last month I find myself also thinking, "Lovaas didn't really know shit." Did he have children of his own, or was he simply an ABA theoretician, because let me tell you, it is easy enough to come up with a theory based on observation. You just put your heart in a freezer and then you carry on. You know what? I think Lovaas and the fucking ABA-ists are the original refrigerator people.

The real question is, WWSD? What would Solomon do? Because only he could solve this, although, come to think of it, he was the Brain who came up with the solution of splitting the baby in half -- but that was taking a gamble that the true mother would make herself known in time. Brilliant, but scary.

I'm tired of scary. I just don't understand what has gotten into Nat or how to help him. It doesn't help that at the Team meeting one of the evaluators came up with age levels for Nat, according to how he tests, and those very very young numbers keep rattling around in my head. What does it mean, that he's such-and-such age really? Is that true? Or is it only partly true, and totally a lie in other ways?

I think evaluators, I.Q. people, etc., are like weathermen, actually. They look at their data from their safe distance and they apply some set of rules and then they come up with their predictions/conclusions. And then when real-life people hear about it, they feel good/bad depending on those words. They make plans, or they scrap plans. They maybe even convey their sadness to their children subconsciously.

Shit.

So things were looking pretty bleak for the Senator-Batchelder household yesterday around lunchtime, but then, somehow, the son really came out. I took Nat outside, spontaneously, to a little neighborhood party, a treasure hunt being run by one of B's best friends and his family. Nat wanted to go, and went willingly. He was smiling softly the whole time, interacting with people or being quiet/stimmy, his old beautiful self. I hope Ben noticed and was soothed by it, but I don't know. I was.

And then later, Nat napped and I weeded and planted. (Some stuff is really coming up, like my peonies from my neighbor's garden that stalled last year, actually have buds, so come on, ants!) My wisteria is wisterical with blooms about to burst open (it is a huge arbor on the street-side of the house). My apple tree looks like a strawberry sundae.

Then I cooked a brisket. I don't know why, probably because I'm reading Julie and Julia, about the woman who cooked through the entire Mastering the Art of French Cooking. There's lots of cuts of beef mentioned, plus I have a lot of herbs growing on the playroom window. I called Natty in and showed him how to peel potatoes which he did with total enthusiasm and no mishaps. Could a 3.7 year old do that? I think not.

It was, needless to say, delicious, if a little light on fat (I had bought a single brisket because it looked less disgusting than the double, fat-filled kind).

Went to bed completely satisfied with my family and my cooking and then woke up to this drek. Well, the moonbounce is coming at 10 a.m. and Little Beastie's belated party is happening, rain or shine. We'll bounce and we'll eat and drink however we can. Because real life includes storm clouds and unsolvable tantrum dilemmas and playing by ear and by heart. Families are the real practitioners and let me tell you, we need better tools than balloons, radar, percentages, and M&Ms.

You didn't know it, you didn't think it could be done
In the final end he won the wars
After losing
Every battle.
--Bob Dylan, Idiot Wind

You know when people say, "...Then the terrorists will have won," they mean that we should not be stopped by our fears of attack, we should not stay cowering in our homes just because of the new threat of terrorism. We should, instead, live our lives but perhaps with a bit more of a sense of the reality of the preciousness and possible brevity of life.

This phrase ran through my head, uncontrollably, as I returned to my driveway with Nat and Ben in the car, my plan to go to the track in utter shambles. Nat was bellowing/howling/shrieking because I suppose he did not want to go, because I sprung it on him, because it is spring and the lighting is intense and beautiful, because his meds are not quite right, because he wanted to just lie around the house staring into space, because because because because because....

I had just explained that I can't always give into Nat's tantrums because then he would never grow in his experiences, and he would learn that this is the way to get out of doing anything he didn't want to do.

But Nat was screaming his head off and Ben suddenly burst into tears, saying, "Can't you just give into him? Can't you just give in?"

If I give in, I am reinforcing that lesson, I thought. The terrorists will have won.

But Ben was crying! How could I place the value of Nat's lesson learned over Ben's pain? So I turned around and we went back in the house; I felt like I'd been kicked in the ass. I was seething with my impotence.

I had a small, mean pyrrhic victory, where I insisted that Nat go in slowly and quietly, and made him stop and help me with the laundry. I watched with twisted, ugly satisfaction as he obeyed my orders with shaky deference.

After we folded the laundry together, I told him to go find something to do. I was finished with him. I was still angry, and my heart hurt, too. I asked Ben to come inside my bedroom. I said, "I'm sorry, Ben."
"Why? Because you let him live?"
I swallowed hard. "Uh, no, because I let him scare you."
"Oh."
"You're probably angry him, at me? At God? At autism?"
Ben nodded.
"So am I."

We sat there for another moment, and then he said, "Okay then." And he started talking about Kingdom Hearts, how he was winning, and was even doing better than Max.

Nat is now perfectly calm. I'm going to try again soon, but maybe without Ben in the car. Some wars are too important to lose.

I have been asked to be on the Autism Speaks Subcommittee on Adolescent and Young Adult Issues. From what it sounds like it covers, I believe this is a good starting point for me in the world of adult autism advocacy. I will learn more about what this particular subcommittee does, at a meeting on Tuesday, but the person who first reached out to me about this is someone I really trust and regard very highly. It is my hope that if I do work with Autism Speaks, that I can help make them understand about neurodiversity and the need to have autistic people on their boards and subcommittees. The Autism Speaks tagline is: "Autism Speaks, It's Time We Listen." I already know that people with autism "speak" in their own ways, it's just that many of us still don't know how to listen, but I believe we want to. I hope that their "we" includes the organization itself. That won't stop me from joining; I have confidence that I can make a difference in some people's minds in this regard.

My ups, my ups, my lovely lady ups.
--Black-Eyed Peas (?)

I took a one-day hiatus from sharing my blog with all of you. Yesterday began horribly, and it led to my decision to take myself back from the Public I. But in doing so, I forgot just how many good-hearted people there are out there who are compassionate and help me just as much as they claim I help them.

I am going to summarize some of what's going on:
1) An excellent IEP meeting on Monday, where we (the team) did a lot of working out details of Nat's coming year in terms of his comprehensive development (vocational training, communication work, leisure/fun repetoire). Everyone seemed really to understand Nat, and to appreciate his gifts. There were many specific examples as well as clinical three-year evaluations of Nat's growth. To fully understand how far he has come in just a few years -- this made me very happy. I now feel that we have a vision for the next 5 years, and a bit of a path has been cut for us to follow.

However, as often happens when something wonderful occurs regarding Nat, I became very melancholy over the next few days. I realized once again just how much psychological energy it takes to do what I need to do for him. Not just the meetings and the phone calls and the delicate negotiating with others; there is also the weight of worry about him, the lifelong sense of his dependence on us. The feeling that he is such an innocent, as compared to the complex world he lives in, and the need to be sure he can either protect himself (whether from the errant car that runs the light even though Nat sees that the sign says he can "walk," or from the indifferent professional whose lack of connection cuts off an avenue of potential growth and happiness) or be protected.

2) Max wants to get dredlocks. He is 15 and it is getting harder and harder for me to tell him he can't do things to his appearance. I can give him my opinion, and try to steer him away from what I think are unfortunate choices. I save the fights for really important stuff, like morality, grades, safe sex, no drugs or alcohol.

3) Spring is in high gear; I took my first 10 mile bike ride today. Heavenly. The new leaves are out on all the trees (the lighter green, temporary ones that fall off and are replaced by darker ones). My garden is colored like a box of Jordan Almonds. Too bad you can't eat tulips!

4) Ben's birthday party is Sunday. We have rented a moonbounce with a slide. We are trying to figure out what the cake should be...

Laura just sent me this Tabblo, made from the pics she took in NYC! There might be some in jokes that no one else will get, and which are far too esoteric and Senator-family trivia to explain! Just enjoy...

...Don't care if it's Chinatown, or on Riverside
I don't have any reasons, I've left them all behind.
I'm in a New York state of mind.
--Billy Joel

My time in New York was a blast, a total, no-holds-barred blast. There is no one on earth I can laugh with like my sister Laura. And beyond that, we value many of the same things, such as intense relationships, our marriages, our children's development, and our parents. And these are what we talked about for our 27 hours together, as we walked first from Penn Station all the way to our hotel (carrying our overnight bags and pocketbooks, me in my pointy black suede boots) which was the Loew's Regency on 61st and Park. On the way, we headed up Fashion Avenue and stumbled upon store after store of sewing goods.

We went into one of the sewing stores and found rows and rows of appliques in all different colors, just like the beaded kind you find on bellydance costumes. I have yet to find such a treasure trove in Boston. I found a pair that exactly match my favorite bellydance costume, the hot pink Hanan. My idea was to sew these appliques onto the cups for a tad more coverage. This costume is the one that is the highest caliber of craftsmanship and it fits and flatters the most of my three costumes, even more than my custom Safti, which I still love, but... So when I found this trim I realized I had a solution for making the perfect costume. And then I began thinking regretfully about my decision not to perform in my class recital...

We dumped our stuff and I changed into sneakers (yes, me, in sneakers, in public! But guess what? Sneakers and skinny jeans are de rigeur on the East Side these days.) Then we went right back out and found a pizza place. Generic New York pizza, which is several cuts above the best pizza you can get anywhere else. Big, wide slices with soft thin crust, just enough sauce, and lots of cheese. We did not talk much as we gulped down that manna from heaven. Then we took the subway down to Union Square and walked some more, to the East Village. The shops there are great! Not overly expensive like Soho or other parts of the Village. And no chains, either.

Bought a couple of interesting items; I found a frilly little white jacket with just one huge button, at a little shop called An Ren, which was filled with little jackets that were totally delightful. Then, next door, was a store just made for my men: Giant Robot, with funny Japanese animation items (a set of stickers that said, "Hello Kill You!" and Happy Mushroom, so Japanese and funny and bizarre). The whole time we were picking things up, laughing, talking about our kids or our husbands, like two bodies but one mind.

When we got tired we went to a delightful little restaurant called The Cloisters, which had stained glass windows and a garden with outdoor dining hidden in the back. We had lattes and dessert.

We just kept walking, meandering, wasting time, and realized suddenly that we never do this. In our complicated lives back home, we are always checking our watches, feeling whatever lovely moment we are in dissolve as the family obligations seep into our consciousness. But this time, we had the whole day to ourselves, with nowhere to go, except a very late dinner reservation at Tagine Dining Gallery in Hell's Kitchen.

Eventually we took the #4 train back uptown and luxuriated in our room. There was a huge marble tub and a separate glass enclosed shower. She went into the shower, I drew a bath. We talked and joked (I will spare you our raunchy sense of humor) while we relaxed. Then we got dressed for dinner.

Walked into the restaurant and was not impressed. It did not look that different from the Middle East, not that there's anything wrong with that, but I had in mind something sumptuous. Still, it was friendly and the band was good, so we ordered drinks and settled in. The first dancer came out at around 9. She was not that good, but she did go to every table and got someone to dance with her. So I danced a lot that night. The second dancer was much more accomplished, and beautiful, too, with long black hair, pale skin, and an antique beaded top with a royal blue skirt and lots of eye glitter. I danced with her and it was a delight. Laura danced with her, too!

In between the dancers' shows, I made a request of the band: Aziza, a song I love. The owner came over to me and drew me out onto the dance floor. I did some really good stuff: camels in a circle, hip drops, mayas. I could really think and figure out what I wanted to do. Then I got too bold, and did a spin, and knocked over my empty pomegranite martini glass. Oh well. They could have cared less, though! What great people. Everyone applauded when I finished.

(Right then I realized that I really had to do my recital in May. I had withdrawn from the class because it was just so grueling and I truly felt like the worst one in there. But it felt like the wrong decision, once made, and so today I asked my teacher if it was too late to rejoin. Of course she welcomed me back.)

By the time we sunk into bed we were crazy tired. But we kept making each other laugh until finally we just fell asleep, and slept until around 7.

Next day, I was aching from all the walking, but we were determined to do it again. This time we went to Central Park and then the East Village, and then a delicious brunch, and then back to the room for more relaxing before the trains. We packed up and took our bags and walked back to Penn Station the entire way, stopping here and there (once at the new Apple Store for Max; I bought him iPod Nano socks.) We discussed what we get Dad for his 70th birthday (May 14), and made some decisions about that.

We were tired at Penn Station, and reluctant to leave each other. A lot of hugging and kissing. A total whirlwind visit, of love, fun, and laughter. This is corny, maybe, but I really thank God for giving me a sister like that. Stay tuned for the Tabblo...

What I really want, really really want, is a cat. I know exactly how to take care of them. They are the perfect level of maintenance for me. And they really have personalities. Mine used to nap with me, curled up next to my pregnant (with Nat) belly.

Truly, I can't imagine a dog. I can less imagine a bunny. And the lesser pets are just smelly work. I want a cat. I love all black cats, where you can't see anything but their eyes.I hate the siamese ones or the hairless ones, so don't even bother suggesting it. I have a cat allergy and that's why I don't have a cat. I did not always have this allergy, not when I had BallyCat, 19 years ago. But now, I definitely do. I don't know if there's a way to overcome cat allergies. But that's what I would do. Maybe I'll email my doc and see if there's some way to get me past the cat allergies?