Susan's Blog

Saturday, January 17, 2009

My Other Teenager

Maxie!
(I filmed this to send to my parents. See how I have to prompt him, just like with the other two boys. Sons!) Ben’s is equally delicious, but he does not want me to post it publicly. See? I respect my boys’ wishes… right? right?

Fleeing Beauty

A happy moment caught just now (Sat. morning) on camera. We’re just being silly.

Friday, January 16, 2009

Hang Me For A Lion

Can the lion lay down with the lamb? Call me a Naive Pollyanna, but I do believe that most parents in this life want everything good for their kids. The great majority — and I mean all but a (very) small percentage of disturbed people — love their children and want nothing but for their kids to be happy and healthy.

I do not believe that the people practicing “biomedical” interventions for their autistic children are bad parents, not at all. In fact, the particular example I link to is an old and dear friend of mine. I do not believe that, if you feel that autism is heartbreaking and hard and sad that you are a bigot or narrowminded. I believe that these people are more likely than not, devoting their lives to helping their children. They may be practicing alternative methods not (yet) backed up by science, but they are trying to help their children live and thrive in a very difficult, demanding world.

But likewise, I do not believe that if you accept your child as he is and only seek to create greater awareness in the world at large, about acceptance and empowerment of autistic people, that you are neglecting your child’s growth and development. That if you decry unproven science, and that you seek to protect your child from any possible harm from potentially harmful practices and therapies, that you are sick and trying to keep your child disabled. The example I have linked to here is also someone I love (from across the world) and respect.

Most parents are only thinking of their children. I have interviewed so many for my book at this point. Not just people who are Neurodiversists. I have also interviewed Biomedicalists (these are my own awkward terms). I have tried to straddle all the different worlds because in the end there is just the one world: love for your child.

Of course there are crazies and exceptions. But I believe that the majority of us want what we believe is best for our kids, first and foremost. We are programmed that way (see Theory of Evolution).

I think that the angry in-fighting has to stop and we all have to make room for many different minds and stop all the hatred of the Other Side. Because the other side is most likely just another parent who loves her kid as much as you love yours.

Wednesday, January 14, 2009

Swee Mail

Dear Mom
How are you?
I am good.
I had music this morning.
I played a violin.
Love
Nat

From: “susan@susansenator.com”
To: natb
Sent: Tuesday, January 13, 2009 11:37:06 AM
Subject: Re: Re: Re: Re:

Hi Nat,
I went to work today, teaching at a school.
I am eating lunch now and wishing I could see you.
Love,
Mom

Everyday this week I have been getting an email from Nat. They are very formulaic, like his phone conversations. I always wonder if the content is controlled by his teachers, and how much is generated from him. They tell me that they prompt him with ideas of what to talk about, and he generates the sentences, and then they correct his spelling.

I am on Facebook and the little chat box pops up frequently, giving me a dose of these tiny little conversations, that sometimes remind me of Nat’s emails. Yesterday when I read his Swee’Mail I thought of I.M. and FB chatting, and I wondered what Nat would think of this. I think maybe he’d like it, because it would be instant response rather than delayed as the email is. I don’t even know if he reads the email I send back, and if he does, does it make any sense, without a visual or a context?

I.M. or Facebook would have my face — well it would have my rose icon, but maybe Ned could change it into my face. With his teacher looking over his shoulder, he could read it and she could repeat and explain, and maybe — ? Would it be interesting to him? Would he feel like, “Oh, that’s why people talk to each other, it is fun, it feels good!” Or would he feel like, “more talking.”

I want to try it, but I don’t know what to expect, and I’m probably expecting a real real lot.

Tuesday, January 13, 2009

Me and We

Argh, things are going well, but every time I think of Nat I get stuck. I think he went back too soon this past weekend. It is hard to get it right, the back-and-forth. He was willing enough to go, but I just missed him immediately. No tears, just a stinging heart.

The more fun we have as a unit of four the more stark is my surprise. It is as if sometimes I exist on two planes: the me that misses Nat terribly, and notices all the empty spaces where he should be, like the non-uploaded people that float around Facebook. The me that doubts, questions, and worries. And then there is the me that is — I hate writing this — moving forward.

How can I move forward? What does that mean for Nat? Who is his champion, if I am not always here for him during the week, and all he has is his phone calls to me?

That is the Grasping Me. It is quieting down, though. I see that there are so many others who really care about him, who monitor his progress, his health, his mood. Some at the House seem even to love him already (how can they not?)

The forward-moving me has enough energy and time and freedom to work, write, play, etc. That me could go out into the snow on Sunday with Ned Max and B and just sled and sled until our wet toes and butts were just too painful. See, going out into the snow used to upset Nat — about half the time. It was hard to predict, and that is why I would always feel anxious. It’s like the reverse of the rat with the pellet: if only every so often you are rewarded with an outburst, you are always afraid of an outburst.

So to go out into the snow without a thought, and not only that, to defer lunch…! Wonderful. The thought flashes through my body like a small electrical shock: because Nat is not here. Just Max and Ben, big and small puppies rolling in the snow. The four of us, a neat unit coalescing easily.

Except, of course, that also feels terrible and disloyal. Nat was not with us, so it was easy. Of course it was easy. But that’s what makes it so hard. That, to me, is one of the worst things I have learned lately, the cruel fact that you can love someone and then to find that it is easier not to live with them.

We have re-formed, into new parts. The trick is, for us, to keep ourselves soft and flexible enough to let Nat in and out. We all have to be his champion. I need their help, I need them to remember and to feel Nat’s absence. The me is actually a we.

Saturday, January 10, 2009

Real Love

I had just finished reading the poem
about love and the stars and the wine
beautiful love-like
I turned to you to say
“I don’t get it” (as always)
We smirked
Then you looked at me
Serious, important, startling blue eyes
And you said, “I was thinking,
About your washer fluid.”

Friday, January 9, 2009

Classy Clown

Did it start way back when his little big said, “Into Mischief?” Is it a self-fulfilling prophecy? This was one of the first phrases Nat learned: “Mischief!” he would say with a devilish grin.

Then there was the time when he was learning to spell. He would say, “O-R-A-N-G-E spells ‘orange!'” and things like that. So one day, he was in a different aisle of the hardware store from Max and me. We could hear him spelling with a frenzy. Suddenly we heard: “P-F-G-A-W-V-I-X-S-O-N spells: BM!”

Then, recently there was the “ready, set, go!” that Nat did in gym a few weeks ago, where he tricked a classmate into going before the gym teacher said, “Go.”

And today: Nat had to put his shoes back on, after the nurse had checked his infected blister. Nat’s teacher bent down to tie the laces, asking, “Do you want me to tie your shoes? Can you tie them yourself?”

Nat answered, “No tie your shoes.”

Terese began to tie them for him, thinking he meant that he could not tie them. He then moved his foot away and tied his shoe himself.

Terese said, laughing, “Nat, you lied to me! You said you couldn’t tie your shoes!”

Nat just smiled that mischievous grin. And a Class Clown is born. Or always was.

Don’t Borrow Trouble

I really think it’s okay not to deal with something until you are ready to. If it is not time to hear about that thing, then don’t.

I’m going to a Parent Advisory Board meeting at Nat’s school at the end of the month, for the first time in years. I was thinking about how maybe six years ago I attended a Parent Advisory Board meeting at Nat’s school, where I got an earful of stuff I was not ready to hear. I had gone to see what I could do about helping raise money for the school with an eye towards improving conditions for the teachers. At the time I was incensed about how fast the turnover was there; Nat would get a new teacher every 6 months, it seemed. This was the worst possible situation for Nat, who really likes stability, for the most part. My idea was to encourage the teachers there to unionize so that they could demand better pay. Coming from a family where my grandfathers were socialists and union organizers, and my parents were in teachers’ unions, I had always heard about the good side of unions, how they improve the conditions of the workers. I believed in unions and I still do. (This caused a very weird situation for me when I was suddenly Management, on the School Committee!)

Needless to say, my union ideas made most of the people at the meeting go blank. The fundraising they wanted to do was much more benign: to sell Yankee candles and give them to the teachers for a coffeemaker, that kind of thing. So be it. I dropped my pinko ways and focused on Nat again.

One thing that I heard there was about the residential conditions at the school. Wow, I did not want to hear that stuff. All I could think was, “Thank God Nat is living with me.” It’s not that I heard anything bad, only stuff like rapid staff turnover, too many staff people going in and out of the Houses, etc. But to me Going Residential was such a terrible step, I could not even bear to hear about kids who had. I could not imagine how parents made such a decision.

Well, now I am one of them. It happens. You get to a point where you can deal with the scary future because suddenly the scary future is NOW. And it now has a context. Like Nat, I need a context to fully understand something; I can’t just listen to random facts.

But when you are ready, you will know. Or you become ready, and you stand strong and you take it. Because you have to. Because you can. As my mother would say, “don’t borrow trouble, it will find you soon enough.”

Thursday, January 8, 2009

Is It Write?

I have been writing all afternoon, and so now it’s time to take a break and — write! But blogging is not like writing writing; blogging is just my head melding with my fingers, keyboard, and screen. There hasn’t been a post in a few days (I don’t count the Today Show and the No Show, nor do I count the Tabblos), so a lot has been stewing. This thought-meat is now so soft and tender a for could go right through it.

I’ve been thinking about whether it is right to write about one’s kids. Some readers have been commenting to me about those who are trying to profit from their kids in one way another. I want to address that from my own perspective.

First of all, there’s the rights of the kids. With some kids, you can ask them, or you can get a sense as to whether they mind being exposed to the public. Max says he doesn’t care; Ben does. So I am very, very careful with what I say about them. But I still do say things about them. I believe that as their mother and as a sensitive, intuitive person, they can trust me to do justice by them in my writing.

Many readers probably think I don’t give Nat the same consideration. Oh, but I do. I don’t know what Nat knows, and I try to guess what would bother him, were he to be able to understand my blog. I believe that he does not understand my level of writing. His conversation and reading comprehension demonstrate significant delays. Therefore I don’t think that what I write would upset him; still, I am very very careful.

I am the kind of parent who believes in disclosure. If Nat could understand what it meant that he was autistic, I would tell him he was autistic and we would then have some kind of conversation about it. But so far, all I have managed to convey to him is that Nat does this or that differently from his brothers, or that Nat is doing a good job learning how to talk, how to help with chores, etc. I just have a certainty that he can’t understand any deeper than that. He does not seem to be a wonderer. He seems, rather, to live in the moment, making himself happy with playing around with words and moving his body in certain ways.

I believe, in the end, that it is okay, and in fact, it is good, to write publicly about my perceptions and questions, fears and hopes because I hear from others and I then make sense of life. Sometimes, though, it is just about articulating my thoughts in print. I press “publish,” when I feel secure in what I’ve written. If I find myself thinking, “Why the hell should I tell them that?” then the post becomes just a draft.

Items that I believe would embarrass or upset my children do not get expressed here. But problems and questions do. When you ask a question, you are not violating anything; you are asking. You have not concluded anything.

I also write things to help others, so they can learn from my struggles and my mistakes and my revelations. I make judgment calls about some issues. There is very little written, for example, about how to help your child be appropriate and safe with his/her body. So in my book I did write about our experiences with Nat’s development and the problem of privacy. That was a decision Ned and I carefully considered. I tried to write sensitively and appropriately, but I felt that to write about it would help others. And I was right. Tons of people have come up to me after talks and thanked me for writing about this; dads especially. It is so important to know we are not alone in our challenges, and how to balance our love for our children with the need to make them stand on their own and take care of themselves.

I also write to make the non-autism community understand. I write to make the world a better place for Nat and for people like Nat.

I also write for myself, for selfish reasons. I do indeed get a lot of pleasure over the fact that I wrote and published a book, have another on the way, that I get to express my views and experiences on national TV a few times, that I got to go to the White House and talk to powerful people about my concerns. I got to give my book to the First Lady. That was really fun and satisfying. I felt like I was doing my best as a person to improve life. So in that way, I do get some personal joy out of writing about Nat and my experiences. I wouldn’t write and speak, etc., if it was not fulfilling to me. And yes, I have made a career out of it, and I don’t see anything wrong with it; I see a lot right with it.

I don’t know what people like Jenny McArthy think about, or what motivates her, but I guess I believe that even she, a beautiful woman who has tons of money and fame, is not writing and speaking about her son for self-aggrandizement. I think she is trying, in her own way, to get the word out. I don’t agree with a lot of what she thinks. Her word may not be helpful to many of us, and downright angering and depressing to some, but I think her motives are good. I believe she loves her son.

Maybe I’m all wrong. I’m sure you’ll tell me what you think!

Tuesday, January 6, 2009

No Show

I think the Today Show opted for a report from the Bahamian Health Minister, rather than my take on autism and the family, because they all seem to feel at this point that the cause of death of Jett Travolta was seizures, and that the Travoltas did try to treat him (with Depakote). So, may he rest in peace.

Monday, January 5, 2009

Today Show Appearance

Nat and I are going to be on the Today Show tomorrow (Tuesday) morning, the early part of the show (7 or 8 a.m. EST). They are doing a piece on autism and the family, in light of the Jett Travolta tragedy. They wanted to explore the idea of shame and autism, and they were asking me about that, and going public, etc. I hope they handle it sensitively.

Here are some pics Ned took of the filming:

Sunday, January 4, 2009

Shmingerbread

The Cartoon Network show “Chowder” was our inspiration this year for the gingerbread house. It is really called Shmingerbread, and you make it for Knishmas.


Tabblo: Shmingerbread

Ben’s favorite cartoon, “Chowder,” was all about making Shmingerbread for Knishmas. So we thought we’d try it, too. We never use a pre-fab house or a kit. We do it all from scratch and turn it into a three-day, all-family wintertime event.
See my Tabblo>

Thursday, January 1, 2009

Off to a Good Start

Last night we all went to a New Year’s party at a friend’s in Cambridge. All went well. Hannah and Max enjoyed playing with the host’s new Rovio, Ben played with our friend’s little sons, and Nat bounced around, listening to the music and eating the cookies. He was nervous around their dog at first, but eventually he settled down, which was a new thing. I was so proud of him. I did feel the need to explain his frenetic bouncing and flapping to people I met there, and I would do so with a smile. “He’s autistic, you know,” I would say. “I’m just saying. He’s very happy to be here!” And they would nod and that would be that.

I marvel at how I’ve changed in that regard. I know I’ve said this before but I used to dread bringing Nat places, and to watch people watching him. There has been such a sea change in me, however. Now I love to watch people watching him, I feel like they’re kind of lucky to see Nat. I feel that way about all of my children; very proud of their whole being.

And when we got home, around 12:45 a.m., Nat’s light was not working properly. Very quickly he ramped up to the screaming and the arm-biting. It is a terrible thing to witness, a person getting so worked up into a rage, and you just know that he knows it and he can’t stop himself. It has always felt that way to me, as if it were a self-perpetuating, snow-balling kind of thing for Nat when he gets that upset. I can almost feel him giving up, giving in to it. I think I do that, too. It is very familiar.

So that thought kept me connected to him and allowed me to think on my feet and help him, rather than just being afraid and reactive. I said sharply, “Nat! You can do this. Nat! Sit here, calmly, for two minutes. I’m going to set the timer.” He sat down, and immediately started screaming again, so I repeated the whole thing, even resetting the timer. One more go around, and then he stopped.

I think distracting him with the simple request to sit down and wait for the timer was a good way to create a space around him, so that he could regroup. I could then talk to him about how things break, how the light switch was broken and Daddy was fixing it. I reminded him that things break and we can fix them; see, there’s the screwdriver. He started sucking his thumb and even doing a bit of his own language, and I could tell he was feeling better.

I feel very proud that the whole thing seemed within a spectrum of familiar events. Nat did not seem like a creature, nor did the outburst seem “out of the blue.” It made a lot of sense, actually. Stupid old house with its old wiring. Anyway, I think it was the start of a good year.

Wednesday, December 31, 2008

We’re Going To Be Friends

One of my hobbies is to play the guitar. I have not done it much in the past three years because my creative energies have gone into bellydance, but lately, certain guitary songs have been in my head so much that I looked them up on the Internet to find the chords. The White Stripes “We’re Going To Be Friends” is particularly stuck in my brain, so I decided to record it and then YouTube it, and send it to my parents who are in California and missing me (and I them). I might as well share it with you, too, but don’t laugh at my voice! And Happy New Year!

Sunday, December 28, 2008

Letting Them Grow Up

Our Pierre tape is really starting to deteriorate. I was watching with Nat, back here on the window seat because he had banished me from his area of the living room, and then I went into the kitchen to tell Ned I wanted another baby. “We should have had a fourth,” I stated.
“Why?” asked Ned.
“Because I love babies,” I answered. And our babies are so cute (were so cute) and I baby our sons a lot, probably too much.
“Yeah,” he said. It was then that I heard the Pierre tape stop and then restart a few times. Nat appeared, about to ask for help. Ned and I came into the livingroom and we both saw the horrible blue screen with the message, “Clean VCR heads…” Oh, no, I thought, we don’t have that cleaner cassette anymore! But Ned, my superhero, knew where it was, and inserted it. Meanwhile Nat was running around all over the place frantically. [[Ned then told me about this NPR story, about how the last company to sell VHS tapes is going to stop manufacturing them. In the story, he said, the reporter asked what people should do with their old VCRs, and the response was, “Donate them to schools. Public schools are still using them.”

If schools are still using them, as well as probably alot of autism families who prefer the familiar old technology, doesn’t that constitute a large enough population to continue manufacturing? Besides, haven’t we learned our lesson from vinyl LPs? Now people collect them, and there has been a resurgence of record players (seen in Best Buy and Restoration Hardware)! And truthfully, don’t we all miss the large album cover, with art you can actually see, and maybe a poster inside, real size? Don’t we all hate the little plastic cases CDs come in, wrapped up as tight as if it were as dangerous as nuclear waste (cellophaned and stickered)?

Sure VHS tapes are clunky and breakdown, but who of us is perfect? There is something so accessible about the VHS tape that you simply slide into the mouth of the VCR. You can just imagine its mechanism grabbing the tape and reading it. Whereas, what the heck is the DVD? It looks like a CD but comes in a bigger, equally impossible case. It has all these directions before it can even play: the infinte loop of a menu; the go-ahead-and-just-play-me; the scene-by-scene; the outtakes. Too much, too much! Which button, which remote?]]

…Anyway, Ned got the tape clean while I told Nat I was so glad that he had come to get us for help. His running settled down as we watched the tape settle into a reasonable straightforward presentation. I wanted to think about how long Nat has been watching this tape, and how that takes me back to the babyhood days. I wanted to kiss him for being so innocent.

But I also had in mind that even though he acts that way, even though this seemed like a babyish choice for a nineteen-year-old, it had a lot of meaning and significance for Nat. And that even though he is adorable and sometimes sounds like he’s talking like a baby, he is a man. And I need to respect that, to let him make his choices and stand back and let him enjoy himself without putting my interpretations, my needs, on him. How to let even Nat grow up, even when he seems so utterly young. He. Is. Not. A. Little. Boy.

This way of thinking is new to me and yet it brings me comfort. It helps me let him go/grow in a good way. It helps me let them each go a little bit. To realize that all of the still-adorable things my sons do makes me fill up with motherlove, but to them it is something else altogether.

And that if I fill up with that motherlove, it is about my feelings, my longings, and may not be relevant to them, to where they are now. (It may not even mean anything, or have to lead to anything…hmm.)

Saturday, December 27, 2008

Breakfast of Champions

A friend and very wise man told me that one key to happiness is very simple: acknowledge when a good thing has happened. If you remember, just last weekend we had a pretty aggravated outburst which was about the order of breakfasts. One thing about Nat is that it is extremely important to him that everyone eat breakfast before engaging in too many other morning activities. Last weekend, we had forgotten to eat breakfast and instead we were all pulling on our snowboots to shovel and play, and Nat completely “lost it” (a remarkably casual and unsatisfying expression for an actually very serious happening. It would be more apt to say that Nat completely dove into it, or chomped it, that kind of thing. Lost it is so offhand, forgettable.).

So there we were with our marked-up hands , sunken hopes and deflated hearts and all other down-and-outs. My entire affect around Nat turned around; suddenly after months and months of relaxed, in-love Mommy, I was the soldier-at-arms, ever-vigilant and timid mother. Shit.

Luckily, the people at Nat’s House have a different perspective. “I can’t promise anything,” Donnie said, “But it will probably be okay if you have enough structure and activities planned for him.” (Donnie may not have said that, but that is what I heard: it will probably be okay, this is a blip, etc. No matter how many of you said this to me, hearing Donnie say it just went right into my brain and made itself comfortable.) So I did plan a lot of stuff.

And just now, I had Nat empty the dishwasher so that I could then reward him with the activity of his choice: listening to his new Tigger CD. I put some grilled cheese in for me, and we went upstairs together and I started fiddling blindly with all the incomprehensible buttons on the boombox (yes, I probably need reading glasses, but, well…) and the music came on, and suddenly Nat was stomping very very loudly out of the room, and Ned was talking quickly in that mounting panicky voice, and Nat reappeared, towering menacingly over me where I sat on the floor, a sitting duck, in front of the stupid stereo. Nat had his forearm hovering in front of his teeth. He saw me looking up at him, with what must have been quite a lot of pleading (but useless, perhaps, in this context) emotion in my face.

But then, the energy slowed down. “Breakfast, breakfast,” Nat was saying. A light went on in my head. Ned’s too: “Just like what happened last week,” he muttered.
“Oh!!! Nat we forgot to give you breakfast!! Oh, come down and have breakfast, Sweetie!” I said, standing up carefully, trying to stay out of the Pinching Zone. Nat’s arm was still spread across his mouth, but no bite had been taken yet. The feel of the interaction had changed markedly; he was staying with it, God bless him, staying with us, fighting the pull towards confusion and rage.

“No breakfast, listen to music.” But he was stomping and stomping and his arm, well … it was in the Biting Zone —
“Nat, it’s okay to come back to your music,” Ned said.
“No come back.”

I went downstairs, and Nat followed me. “What do you want, bacon, bagel, or cereal?” I asked a few times. But Nat was still agitated, stomping, stomping. He ran back upstairs. I decided for him: bacon: the fastest and the favorite. I quickly threw some Oscar Meyers microwave crap (another Key to the Universe, btw), onto a plate, hit 45 seconds, and then called Nat down.

He came running down and slurped up the bacon. “Okay, Nat, now you can go finish your music!”

He ran back upstairs and I fiddled with the stupid, button-filled thing, heart pumping like a rabbit’s, while the stomping around me got more and more frantic. “Music, music,” Nat was saying. I knew what this meant: “Mom, don’t fuck it up by not knowing how to work the damned stereo.” I could feel/imagine the Pinching Zone descending —

“…Tigger, blah blah,” boomed the stereo. Nat stopped stomping. “Mommy will go out,” he said quietly. My breath returned to my body, and soft Mommy ascended once more.

I wanted to cover his face with kisses and dance around but instead I took him by the hands and said clearly and warmly, “Nat, you did such a good job telling us what you needed.” And I went down to eat my stale grilled cheese, which never tasted better.

More Keys to the Universe

Every so often it comes to me that there are certain items or activities in my life that are pretty much always good, never disappointing. They could be a cheap little thing picked up at a supermarket, or some part of a daily routine of mine. The point is, they always do what they are supposed to do. They function as promised. These things I call “Keys to the Universe,” because there are times when even I crave consistency.

Here are some new ones I’ve discovered, and perhaps some old ones that keep on satisfying me:

1) Any book by Ann Hood or Sue Miller. Right now I’ve got The Knitting Circle, by Hood, and The World Below, by Miller, courtesy of my maw-in-law. Thanks, Eleanor!

2) Envi nail polish spray. It dries nail polish immediately. I don’t know what kind of nuclear-space-age-magical material it is made of, but it makes it so that my polish lasts for days and days!

3) To go with item #2, my new technique for fixing nail polish chips. I find a color that closely matches the one I got at the salon; if your chip is small enough, it doesn’t matter if it is not a direct match. The trick is to catch the chip before it gets too big so you don’t notice the slight color difference. I dab it on wherever there’s a chip. Then I spray the Envi stuff on (see above) and I get another day or two.

4) Sharifwear. I have discovered the joy of dancing in comfortable, yet beautiful practice clothes, rather than my formal cossies. I don’t understand this change, but it makes dancing so much easier. I think it has to do with viewing myself more as a dance teacher these days, rather than a performer. I wear what a teacher would wear, and leave the cossies for extra special occasions, like when Neddy requests a dance.

5) Max’s music for working out: Franz Ferdinand, the Fratellis, the White Stripes, Gomez, Weazer, Jack Johnson. They are melodic and they make me think of sweet Max.

6) The new CDs Ned bought me: Niyaz and also Beats Antique. Perfect for new choreography. The first is good for spinning; the second is good for sharp tribal movements.

7) Alternative Leisure Trips Unlimited. This is the independently-owned company that has combined with Nat’s “social group,” aka Brookline Quest, to bring him a glorious bunch of fun, with people he likes and whom I trust. They are game for anything: Harlem Globetrotters, nice restaurants, movies, glow-bowling, mini-golf, trips to Disneyworld, even. Alternative Leisure is the Special Olympics of social life. If you don’t know what I mean, read this. They make you realize that disability need not be an obstacle to a fun life.

8) Baking with Nat. Of course.

9) Photobooth. Benj and I have been making little videos about Link (from Zelda) on my mac and then sending them to his cousin Kimmie, who makes Link videos with my sister and sends them back to us! It’s like a playdate, though they’re miles apart!

10) My gym. I’m sure I’ve mentioned this one in previous Keys but who cares? I need this kind of motivation for survival. I don’t work out for weight loss. I do it for sanity. I crave it. I love it, once I’ve gotten past the painful first 15 minutes of hell. My gym is all women. Nothing but people working out and making friends. It is light and bright, filled with windows and skylights, spacious and classy. There are tons of choices of workouts and machines and classes (even bellydance). There’s the glorious hot tub, steam room with eucalyptus spray, sauna, clean roomy showers with elegant tiling, towels everywhere, big well-stocked vanities; massage, salon, cafe… You can work out, reward yourself with a massage or hot tub, then meet a friend there for lunch, all in one place! It keeps me coming back, even in the dark depths of winter. It is “like a witamin,” as my Polish Grandma used to say.

Friday, December 26, 2008

Christmas in New Hampshire

This is a self-explanatory Tabblo. We had a great Christmas with Ned’s family!


Tabblo: Christmas in New Hampshire 2008

Wednesday, December 24, 2008

Endless Fun


My sister bought me “Endless Wave” harem pants for Chanukah. They are the kind that Bellydance Superstar Petite Jamilla wears for spinning (see her on the left!). I have been practicing my spinning with veils since I took the June 1st workshop with Petite. The purple sequined pants make it all the more fun! They feel wonderful and they flare out like a big purple flower!

Tuesday, December 23, 2008

Eine Kleine Schmaltz Musik

The other day Mom was here and I did a beginner workshop with her, in bellydance. She was excellent; a very fast learner (no surprise; she is brainy and athletic). She loved it, too! Mom suggested I make a DVD for her so that she could practice when she is away from me.

So now I am fantasizing about making a DVD that is about my kind of bellydance: Bellydance for The Rest of Us. Or Bellydance for the Middle Aged Mama. Or Bellydance for Housewives. Filmed right here in my livingroom, with a tour of all my costumes and sparkly stuff. Then I will go through all the moves, step-by-step, and end by showing how I create a choreography (not teaching a choreography, but giving people the tools for making up their own. Give me a dance and I dance for a night; teach me the dance tools and I dance forever. Something like that. Works better with fish. Anyway, the idea is that I will show myself exactly as I am, so that my viewers will realize that you don’t have to be skinny or young to be a bellydancer. You just have to be passionate and love moving to music.

My most common experience is of women blushing and then saying, “Oh, I can’t do that.” Or “No one wants to see this belly dance.” And I feel so bad for them. Bellydance feels so good and looks so good, no matter who you are. And if you have a spouse or partner or lover in your life: he/she will love to see you do it.

I just have to get the word out to older gals like me that their lives are not over just because they have some belly fat. A little schmaltz is actually usually a good thing; ask any cook.

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