Susan's Blog

Tuesday, July 31, 2007

Thumbs Up

Why do we feel so bad one day and so good the next, without there being a whole lot that is different day-to-day in the actual events?

Nat is definitely happier all of a sudden. I don’t really think it’s the fudge. I think it’s the pre-warn that helps Nat feel better about the varying routines in the summertime. (“Now, Nat, remember: Max will be in bed when you have breakfast. He won’t have breakfast until you get on the bus.”

“Okay, yes, Mommy will close the door.”) I went over and kissed and kissed him, telling him how happy he was making me because he was staying calm. He looked very pleased. And I am so pleased with how calm and comfortable he seems today and yesterday; the difference is night and day. Or maybe he is just so touched that I bought all that fudge for him? Maybe just the promise of that chocolate goodness at the end of the day is enough to make him able to stay calm? However good fudge is to me, maybe it is even more delicious to Nat that I can’t even imagine such a thing! Who knows? Because we don’t really know how another person experiences something, I can’t know. And I want to know because I want to learn so that next time I’ll have more of an idea of what to do. Tonight, with Nat joining Ned and me on the porch (I was finishing the Sunday NYTimes crossword and Ned was answering email), it felt so good to have him smiling at us, even joking with Ned who kept trying to get him to stop sucking his thumb. But I’ll take a thumbsucking 17 year old any day over armbiting and screaming. Mmmm thumb.

Vertical Eights

Natalia who bellydances and writes honestly about classes, practice, and performing, has tagged me to tell you 8 things you don’t know about me. I’ll bet those of you who have been reading for a while think you know all about me! Well, let’s see if I can come up with 8 new things.

1) I discovered that my publisher, Shambhala, does historical fiction, so I am getting my 16-year-old novel The Winter is Past ready to send to my editor. A few friends are reading it through for me. I wrote it while Max was in utero and then a tiny boy (which lasted for a few months).

2) I once went parasailing in the Bahamas and I hated every minute of it. Suspended by a string over the Vast, Mighty, and Shark-Infested? I don’t think so. But Ned loved it so much that I thought I would, too.

3) I never used to meet friends for drinks, not until my forties. Now it is one of my favorite things to do.

4) I am hoping to do an intro to bellydance workshop for special needs moms.

5) July 29 was our 7 year anniversary of living in this house, and it is the longest we have ever lived anywhere.

6) Parts of my house scare me, and I think that’s crazy, so I force myself to go and check on them every now and then (the triangle room on the third floor, the old kitchen in the basement, which houses the Silence of the Lambs room, an ancient butler’s pantry that is dark, webby floor-to-ceiling woodwork, and a mouse graveyard. I have only been in there a handful of times, usually when a plumber needs to show me something horrible). Then I pull the doors shut and run.

7) Ned and I haven’t made a party here in a few years. I don’t know why. I am considering throwing a big one for my 45th birthday this October.

8) I get jealous and competitive way too easily (more than you! nyah nyah)

I tag Max, Ned, (because I believe there’s always more you don’t know about a person), Resilient Mom, NancyBea (it’s been awhile), Body Impolitic, Laurentius Rex, and that’s all, folks.

Monday, July 30, 2007

Oh, Fudge

Look out, look out the Candyman
Here he comes and he’s gone again
Pretty lady ain’t got no friends till the
Candyman comes around again…
–GFD

Eeah, Fudge
Hoo, Fudge
–Nat

I defy Brazelton, Leach, or Spock to come up with some wisdom about my life. When Nat was a baby, all those books left me cold. I could not recognize my little guy in their pages. I tore Penelope Leach in half and threw it across my kitchen.

Today I am limping along, bruise-free, with faint hope flickering foolishly in my heart. Last night I tried something a little new: I pre-warned Nat of how things would be in the morning: who would be awake, who asleep; who was having breakfast, who was not. I told him he would have to be calm tomorrow in spite of all those things.

This morning Nat was like the old Nat. Baruch Atah. Boshe Moi. He asked a question or two about Max, like when was he going back to school (after the last week of summer, after Cape Cod is over, in September, in the fall). And that was that.

He had a great day in school, as he has been anyway, and I gave him fudge when he got home. At around 5:30 I determined that Ned would be too late to eat with us, and that I was making pasta and meat sauce. I told Nat during his airing of Peter Pan, and I told him that if he was calm during dinner he would get fudge after dinner.

I had gone to Cape Cod for the weekend and one of my wishes had been to go to Provincetown. My parents obliged me, and we also figured I could take the ferry home to Boston at 3. So Mom and I shpotseered while Dad took the bike ride of his life at Race Point. I was determined to go to Cabot’s, where we always bought fudge when I was little, and where they now sell diabetic taffy in all flavors!!!!

I bought a ton of the bowel-challenging candy for me; I also bought a pound and a quarter of milk chocolate fudge for the boys, a hefty brick of that buttery sweet brown stuff — the warm sticky smell made me nearly swoon with delight — and I said to Mom, “I am going to bribe that kid of mine. If that works, I am going to be so pissed at him.” Mom laughed. I may have called him something less complimentary. Sorry, but this has been an awfully long stretch of difficult behavior. And that’s just me! (HAH)

Well, so far, it has worked. The pre-warn and the fudge. How much more obvious can things get? All it takes is a little fudge? A spoonful of sugar? Well, why do you think I call him Sweet Guy???

Now I just need to buy a lifetime supply of Cabot’s fudge. It could be worse. And now I get to hear happy Nat silly-talking with the word “fudge” sprinkled in liberally throughout his monologue.

Thursday, July 26, 2007

Shavuah Tov

A good week
A week of peace
Let gladness reign
And joy increase.
–Hebrew prayer at Havdalah (when Sabbath ends)

It is 4 p.m. I feel the slow hot day begin to draw back like the tide. The light outside is quieting down, as if seen through partially lidded eyes, eyes about to nap. These eyes already napped, my usual 2 pm. Soft white bed, brightly lit room, boys’ voices downstairs.

My best friend is back in town from her vacation in Israel, so it was a fun day of pedicures, eating felafel, and gossip. My pedicure is the best ever: A pink that’s almost white, and a tiny red flower in the middle of each big toe. Sparkly gold center. They look like someone else’s feet (someone with nice feet, that is!). A pedicure is sometimes a footgasm. It is always so nice to have your feet pampered and cheaper than therapy and almost as effective. It’s at least “like a witamin.”

I spent the morning going over the Colorado trip and perfecting the details. I went on a big 9 mile bike ride (the only one I can take around here because of my proximity to Boston; there’s too much dangerous traffic otherwise. So I head out to “suburban” Brookline, Chestnut Hill and the Estate area, with hilly, winding roads, and a long vista of a reservoir and the Boston skyline, which is not bad for a toy town.) This morning I had one ear bud in, listening to all kinds of stuff. Then Rocky Mountain High came on, what a surprise! I plunged back in time, to when my parents were way younger than I am now, and Laura was my backseat buddy/sometime enemy. My heart was bursting with memories and with hope for what my little family is going to go through soon, too. How will it feel to once again see those sketchy white outlines in the distance, the snowcapped mountains? And all that space around you! I called for reservations and some people actually sound like Westerners! I loved it!

I could see M and B trying to run up Great Sand Dune (it’s 750 feet high!) and rolling down. I suddenly felt so happy to be alive, imagining it, remembering, and riding so fast in the blessed shade. To be able to whiz down Warren Street, faster than a car (or so I imagine). Warren Street is an uphill that feels like a downhill, because it curves and rolls. I was singing at the top of my lungs, speeding down the uphill. I felt sorry for car people. I exchanged knowing smiles with other bikers. I wished I could just go as fast as I possibly wanted without worrying about being killed. But that kind of joy is for children only who believe they are invincible. But every now and then –

I could remember our white water raft trip, where Laura and I were in the front of the raft and got completely wet! All the slides from the float trip are spotted blue, like algae, from where water got into the camera. Max wants to do a slow one, Ben wants a fast one. We are going for the fast one, of course. The scenic ones are nice but they can bore. My teenager is just being obstinate.

Apparently Nat told his bus driver all about Colorado, because she asked me when she pulled up. “He talks to me all the time,” she bragged. What’s the secret? Not being his mom, I suppose.

L’hitrot.

Wednesday, July 25, 2007

The Most Beautiful Ever


I want this one! Help, help, help. Oy. Okay, I better dance tonight so that I convince myself that were I to be a very bad girl and actually order this one, I would perform publicly in it. Yikes! But that’s the deal.

Feat-Us

“Those who are pregnant in the body only, betake themselves to women and beget children — this is the character of their love; their offspring, as they hope, will preserve their memory and giving them the blessedness and immortality which they desire in the future. But souls which are pregnant — for there certainly are men who are more creative in their souls than in their bodies conceive that which is proper for the soul to conceive or contain. And what are these conceptions? — wisdom and virtue in general. And such creators are poets and all artists who are deserving of the name inventor.”
Diotima to Socrates in Plato’s Symposium

I’m pregnant! No, not in body. But in my soul, as Plato describes in The Symposium. My new book feels so much like when a fetus is tiny, just newly discovered, and you don’t yet know who this creature will be nor are you even sure you quite love it. (You are mostly scared of it and loath to face it in its tiny enormity.) But you know you will love it, once it starts to take form and to grow.

When I was just preggers with Nat I remember whispering, “Just stay alive, Little Sweetheart!” He seemed like a little bean to me, spinning inside of me, adding to himself moment by moment. Spinning!

When I was newly pregged with Max, I felt so sick I couldn’t bear it and I wished for a moment that I was not pregnant! So mixed up was the new Mommy. But “Little, Little” just kept growing and eventually grew into my biggest baby, hence Maximillian, which means The Greatest. Ned even added an L to the name, to make it even bigger.

With Benj, I was sick even longer! Because I was kind of old by then (34)! I imagined he was a girl because I was so sick and because he was not a big bump in my belly. But then, several ultrasounds later, we all knew the truth about Beastie. I felt I knew him so early on, because he gave us a lot of scares that landed me in the hospital a few times. Always making his mommy worried!

So now I have this small life growing inside, this odd new book. I have very little loyalty to it. It makes me feel kind of sickly nervous everytime I sit down and contemplate it. I have to have faith that it will come to me, just exactly what this book is, in time for my delivery date (June 1, 2008. This book is a Gemini! Hooray!)

Anyway, I felt it today. That tiny beautiful pressure of creation, that something calling me. That confidence that it is all there, just beneath the fingers on the keyboard. Or in the air before my eyes. The feeling of diving into the most intense part and peeling away to the best writing. Being lost in the paragraphs, resenting the phone and the red appearance of a new email. I worked for about two hours today, and ended up with 1000 words fewer than I started! D’oh! But that is actually okay because it is my process. I start by importing all the stuff I’ve been writing and thinking about (a lot of which you have never seen) and then winnowing out the crap while putting it into some kind of order. Today, I did a good job on Chapter 1. So now I have a lot of Chapter 1 and all of the Prologue and Chapter 5 (except for the other parents’ thoughts, which I will get to soon. First I have to meet with my editor and tell her the whole vision and make sure we are “on the same page.”

To those of you who responded to my call for interviewees: Thank You!! I will be emailing you or calling soon.

Feels good to be back.

Tuesday, July 24, 2007

Do the Write Thing

Good Morning, here is ONE bear called Corduroy
–Lisa McCue

I took the post down I wrote earlier today. I thought it was stupid after reading it again. Silly and not getting at what I really feel. Not really fair to Nat, either. I could tell because after I posted it I had a stomach ache, like I’d swallowed Jiminy Cricket.

Here’s the point: I love my boy so much and I just want to understand what is going on with him. I just want us to be happy. Him and me. His brothers. His dear father. That’s all. We are all five of us equal parts in a family that works. But it has been so hard lately. Nat has not been happy. Stomping, yelling, charging at people, chewing his arm crazily. Not happy. I get at the end of my rope, despair, and then — I find a few more inches. One of his teachers gave me an idea today, simple and clear: write it down. Just write down what is happening the moment he gets upset. Tell him on paper, so he can process it in his own way. Give him a suggestion (on paper) of what he can do (like read Shel Silverstein on the couch). I now believe he cannot process our words effectively when he is feeling in the middle of chaos. And to him, the start of the dinner hour means chaos. But, thankfully, he can process something he reads.

This should be no surprise, and yet, when his teacher suggested it to me, I felt the light, feathery relief of being helped, at last. Write it down. Of course. Nat has always enjoyed the written word, ever since those earliest days sitting on my lap listening over and over to Corduroy’s Day: A Counting Book. That was our very first sophisticated interaction: reading together. Before that day, he could let me know when he wanted food, sleep, or to be changed, but as far as enjoying something with me: reading Corduroy was the first ever. I will never forget the joy I felt as he closed the finished book and then handed it back to me so I would read it again. Why? Because I felt it tonight when he took my note about dinner, read it, and calmed down immediately. And then again when he agreed, spontaneously, to go with us to the park to see some friends. And then when he grinned happily as he watched Ben wrestle with Chris and Andy. And then when he asked to throw the ball to Robbie the Blind Dog.

Peace.

Sunday, July 22, 2007

Power of Pink

A sweet ending to a pretty full day.

It’s a Different, That’s [Not] Okay

When someone offers you a piece of pie, you take it.
–Ned’s friend Paul H.

A mixed day. I took a two mile walk around the Reservoir with Nat, and baked a pie with him, but in between he had a terrible screaming fit and ran outside biting his arm and screaming through the neighborhood. I think it was because someone was refusing to do something that he wanted them to do, like use chili powder or salt.

I was very shaken up by this and just cried for a little bit, got that out of my system. This was when we were supposed to go to a friend’s pool (Ben’s friend Andy). I just could not muster it. So Ned took Ben and I made the pie with Nat, which was a lot of fun. He is very dextrous and an excellent baker. He was trying so hard to do it well! That Miniman. I tried to talk to him later about how he can’t control what other people like because we are all different from each other. He kept saying, “No different! No different!” Finally I said, “Fine, Nat, think what you want.” And that was the end of that. It reminds me of when he was little and we were explaining that something was different and that that was okay. He started saying to himself, “It’s a different, that’s okay.” Which kind of got it right. But he wasn’t buying it now, as a wise old teen.

We made Dot Pie (.py), which I dreamed up after hearing about a bit of software Ned wrote of the same name, using the python programming language, of course. I know nothing about it or pythons but I do know pie and I know when a man goes on a pool outing he didn’t really want to go on, he deserves a really great pie when he comes home.

Speaking of python, snakes figure prominently — and horribly — in the very beginning of the latest Harry Potter book. How do I know? Max bought the book at midnight on Friday night (see footage here) and has already read it. So now I have a great book to read for a few days when I’m not writing mine. And by reading about the Death-eaters, I will be able to stay away from Dot pie eaters.

Friday, July 20, 2007

Ecce Homer

Ah-hah, I touched your heart.
–Nelson Muntz

This helped lift the mood:
Our friend NancyBea originally had the Create-A-Character on her website, which Ned has linked to in his post. Ned and the boys and I sat together and made our family (Nat was not too interested, however, although he does love to watch The Simpsons with us every Sunday). A good laugh with my guys is “like a witamin,” as my grandmother used to say. That, plus a very late but very good argument/talk with Ned. (I know many of you are thinking, “Thank God I’m not married to her!”) Well, I know Ned doesn’t like the late-night argument either, but he does like me, so…

Try doing one of these of your own clan and send me the link!! (with a pic so I can see the real life peeps) Guaranteed to make you smile.

Thursday, July 19, 2007

Notes From Brookline

I am a sick man…I think my liver is infected.
–Dostoevsky

You’ve all got to understand. Things have been so bad here that I have been nearly nutty. I have been feeling drained, sad, and trapped. I cannot get Nat to relax. Every day there is an outburst that makes no sense. An arm-biting, yelling and screaming episode that can last ten minutes or on and off the whole night. He is so fragile these days, so easily shaken. I cannot stand to see him so messed up and angry, out of control. What is it?

This brings out all kinds of feelings in me: sadness, inadequacy, and imprisonment. I need some escape. There is none. Writing is slow. Friends are on vacation. Ned works long hours. My vacation is weeks away. It is raining. I can’t eat for fun. I have very little time to myself with the boys always, always, always around (Ben is not in camp! He hated it so I took him out. It is miserable keeping him off all the technology).

I want to change my dance name again. I can’t tell why but now Lilia has bad memories tied to it, painful associations. I want to be Natacha, which is who I said I was to everyone on my first day at Penn. Also like Natacha Atlas, my favorite singer.

I want to call my book Making Peace With Imperfection. The former stupid title I had sucked. Piece de merde. Slick and glib. I ain’t. Are We Having Fun Yet??!!!! Makes my teeth shiver, like nails on a blackboard.

This is going to be another book that will probably be ripped out of me like an emergency C-section. I am going to give birth, but it feels like a crisis.

(This is getting too emo, as Max would say, even for me.)

Okay. Enough of this swill. If the space around me is suffocating, I shall have to create a beautiful space where there is none. I have to dance, I guess. Probably in the fuschia.

Reservoir of Good Experiences

This is my monthly column for the Brookline Tab. Enjoy!

Tuesday, July 17, 2007

Pick A Little, Write A Little


Well you crazy mama
with your ball and chain
–Mick Jagger

I woke up looking like Cyclops, with a puffy zit in the middle of my forehead. I said to Ned, “Do I look weird?” And he said, “Why, cause of the pimple? You gotta stop picking it.”

Which made me laugh because I spent a lot of yesterday picking that thing every time I stopped to think. I am trying to get organized over my second book, which I am calling Booky (and I’m sure the editor will have a better suggestion, like “scrap this thing.” ) because the real title blows foul chunks.

Aside from the title, I had a good idea which was to add to the bullet lists bits of research I have dug up here and there about happiness theories. So I’m doing a bit of reading now about that and I found that an old Penn prof who lived in our dorm is the Father of the particular theory I’m interested in (Hey, great syntax, Writer Breath! This reminds me of that joke where the southern lady asked a snooty professorial type next to her, “What time we landing at?” and the prof answers, “It is grammatically incorrect to end a sentence with a preposition.” To which Southern Lady replied, “What time we landing at, Shithead?”)

The mind wanders far too much sometimes for real writing. So yesterday, every time I stopped to think, my finger would wander to the invader on my forehead. To stop myself, and to dry it up, I coated it with a dab of mud mask from Israel. But I forgot about it, and Max sat down across from me and did not say a word. But he seemed to be grinning a bit, but I thought that was because I was hassling him about eating too many Goldfish. No, it was because Crazy Mama was at it again. My creative process is an ugly thing, my friends. You shouldn’t know from it. But now you do.

Sunday, July 15, 2007

There Aut to be a Way to Understand

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.

Saturday, July 14, 2007

Productivity Day

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.

Thursday, July 12, 2007

Into the Blue

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


Tabblo: Into the Blue

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

You Are What You Aren’t

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.

Crowded Grouse

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.

Wednesday, July 11, 2007

Babies Mine

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

Tuesday, July 10, 2007

Senator in the House, Reprise

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.


Tabblo: Remix:  White House Dinner for Special Olympics, July 10, 2006

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>

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