MedWorm.com provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest items from the 'Susan's Blog' source. Wed, 07 Jan 2009 11:30:29 +0100 http://susansenator.com/blog/2009/01/no-show.html 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. (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2084080 Tue, 06 Jan 2009 12:49:00 +0100 2084080 http://susansenator.com/blog/2009/01/today-show-appearance.html 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: (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2081149 Tue, 06 Jan 2009 01:17:00 +0100 2081149 http://susansenator.com/blog/2009/01/shmingerbread.html 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.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> (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2078794 Sun, 04 Jan 2009 21:47:00 +0100 2078794 http://susansenator.com/blog/2009/01/off-to-good-start.html 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... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2074318 Thu, 01 Jan 2009 14:05:00 +0100 2074318 http://susansenator.com/blog/2008/12/were-going-to-be-friends.html 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! (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2074319 Wed, 31 Dec 2008 21:47:00 +0100 2074319 http://susansenator.com/blog/2008/12/letting-them-grow-up.html 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 w... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2074320 Sun, 28 Dec 2008 13:49:00 +0100 2074320 http://susansenator.com/blog/2008/12/breakfast-of-champions.html 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 hope... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2067680 Sat, 27 Dec 2008 14:36:00 +0100 2067680 http://susansenator.com/blog/2008/12/more-keys-to-universe.html 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 mat... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2067681 Sat, 27 Dec 2008 13:15:00 +0100 2067681 http://susansenator.com/blog/2008/12/christmas-in-new-hampshire.html This is a self-explanatory Tabblo. We had a great Christmas with Ned's family!See my Tabblo> (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2067682 Fri, 26 Dec 2008 22:35:00 +0100 2067682 http://susansenator.com/blog/2008/12/endless-fun.html 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!See my Tabblo> (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2065378 Thu, 25 Dec 2008 03:44:00 +0100 2065378 http://susansenator.com/blog/2008/12/eine-kleine-schmaltz-musik.html 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 for... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2061074 Wed, 24 Dec 2008 00:50:00 +0100 2061074 http://susansenator.com/blog/2008/12/picture-this.html Nat's teacher sent these two pictures today, (left) attached to a card that Nat had made, which I scanned in to the right. The pictures are from the talent show that the school had, back in August. In the first, Nat is singing into a microphone "Life is a Highway." Don't you wish you could hear his lovely voice? Below that, he is playing "For He's a Jolly Good Fellow" with his teacher, Annie (a total gem).That was such a great day.I am hoping that this vacation there will be lots of days like that. So I have tried to plan out the days, as best as I can (plan-avoider that I am), and I made a special vacation calendar for Nat. I hope this makes him more comfortable, just seeing the familiar structure tools and the number of desirable activities we've arranged for him. Wish us luck! Me and m... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2061075 Tue, 23 Dec 2008 20:12:00 +0100 2061075 http://susansenator.com/blog/2008/12/on-ice.html A terrible outburst, with aggression and self-injurious behavior. A totally beaten-down feeling, a weak evil ghost whispering, "you thought all was well..." A minor blip, some will say. Not enough routine, others will say. Wintertime blahs.Whatever it was, there is sad wintry gloom everywhere. Max is sick. Ben ran hiding into his room and I have that old familiar nauseous dread and a bloody hand. Ned is getting into the snowy car to take Nat back and I am going to go to bed. (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2056140 Sun, 21 Dec 2008 18:12:00 +0100 2056140 http://susansenator.com/blog/2008/12/lat-ke-to-be-grateful-for.html Chanukah -- the Jewish Festival of Lights -- actually begins sundown on Sunday, but we celebrated it this past Friday night because that's when my parents could visit.   ... See my Tabblo> (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2056141 Sat, 20 Dec 2008 18:43:00 +0100 2056141 http://susansenator.com/blog/2008/12/chanook-ah-north.html Chanukah officially starts Sunday night, but in my house it is starting tonight! Two reasons: 1) Nat is coming home and 2) Mom and Dad are visiting and 3) I really feel like making latkes. (Max told me he looks forward to them all year! So there is a huge bowl of huge potatoes sitting on the counter, ready to be scraped. Nat also loves my latkes so, it will be a very satisfying dinner to cook.)Oh, sorry, that was three reasons.We are also expecting an S-load of snow, the first big one of the season. We've already had a few dustings, just enough to make the yard look like a big pfefferneuse cookie. But this one has all the superintendents freaked, so all the schools seem to be closing early. My parents are already on their way, so scared are they of the big snowfall, oy vey oy vey.I have pr... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2052848 Fri, 19 Dec 2008 12:46:00 +0100 2052848 http://susansenator.com/blog/2008/12/ode-on-grecian-earn.html O vision in lycra and whiteNot to loose and not too tightYour bits of gold placed oh so rightYou make me enjoy a winter night.I am suddenly just in the best of moods. No surprise, probably. This just happens to me, it is the way I'm engineered. I totally understand the chemistry now. I also understand that I am really looking forward to the next few weeks, so it is a very real boost. Anyway, I'm just going to enjoy it while it lasts.So, with Ned's agreement, I bought myself something I have not bought in a very very long time: this new cossie. This is because I am getting more and more comfortable with the idea of dancing for others (friends and family, that is), and I need to have a costume that I am comfortable wearing.Last night I danced for about 40 minutes, and experimented with some ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2052849 Thu, 18 Dec 2008 15:03:00 +0100 2052849 http://susansenator.com/blog/2008/12/reductio-et-absurd-ish-um.html My latest column for the Brookline Tab is about my winter inertia. It is also about Nat coming home for December 23-January 5. I am so psyched for that. Of course, nervous too. But not dreading. Honestly, I used to dread those long vacations with him. I never knew what I was supposed to do. Was it okay to let him lie around, watch Disney, suck his thumb, and talk to himself? Wasn't I supposed to create schedules -- and follow them?! I am famous for making beautiful structured plans and then, well, it ends up happening but not at all the way I had laid it out. Poor Nat! If he is supposed to need/crave structure, he got born to the wrong Mommy!I say that because I secretly (well, not anymore!) believe that it is not that simple. Nat is not that uncomplicated. Sometimes he does so well with s... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2052850 Thu, 18 Dec 2008 12:07:00 +0100 2052850 http://susansenator.com/blog/2008/12/annie-get-your-gub.html I am no martyr, so I had to do something about it. Something had to give. No more Mrs. Doormat. No one's putting their shoes on me, or throwing their shoes at me. This Libra is going to take a page from Taurus, and get tough and stubborn. What am I talking about? My jobs. Both of my teaching jobs have to have some adjustments, to alleviate stress.And so, the solution I came up with is to offer two Baby Belly classes, one on Tuesday and one on Wednesday. The Tuesday group will be K-1st grade; the Wednesday will be 2nd-4th. Both classes will be half an hour, no longer an hour. Snacks will be provided at the beginning of class. Maybe I'll have the girls earn their hipscarves, or I'll have a rule where if it falls off, it's off, and no one is allowed to change veil color or hipscarve in any gi... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2046920 Wed, 17 Dec 2008 20:54:00 +0100 2046920 http://susansenator.com/blog/2008/12/raqs-layali-al-lincoln.html I'm going to try to sum up the Recital, but I am exhausted, so bear with me.I got to the school 40 minutes early so that I could decorate the stage. I had my Halloween lights and many, many (freshly washed at a hot temp and dried on medium) veils. I was wearing my black dance pants (low rise yoga-style stretchy with wide flared bottoms)a black tank top and a black lace shawl + my emerald green Nourhan Sharif triangular hip scarf around my hips. I wanted to be in the spirit of bellydance performance, but I did not want to take attention away from the troupe, so this was my compromise costume. Favorite deep pink silk veil.I stood on the risers that were left over from the Kindergarten concert this morning (I pushed them against the walls out of the way of my girls) to hang the lights and to ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2046921 Tue, 16 Dec 2008 22:48:00 +0100 2046921 http://susansenator.com/blog/2008/12/home-visit.html Went to two parties last night, and by the time I got into bed I realized I had talked about Nat's move-out so many times, it felt like a more legitimate thing we had done. The first party was my favorite one of the year, in our old neighborhood, filled with people I've known for years. The woman who hosts it is the one whose porch I ran away to, way back when I almost left (because 7-year-old Nat's sleep disturbances were more than I could bear). Susan talked me through it and told me a thing or two about her struggles as a mom, and shored me up so that I could go back home and live in my life.So last night there were all these friends who had not heard that Nat was at the House and they truly got it. I got a lot of hugs, but also a lot of expressions of joy, because people were feeling t... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2035861 Sun, 14 Dec 2008 14:13:00 +0100 2035861 http://susansenator.com/blog/2008/12/van-at-4-pm.html Things read at 4 p.m.From Terese, Nat's teacher:'Funniest thing happened in gym today. Alan played a trick on us. Alan had the entire class start off with running, once everyone lined up he said "ready, set........" but never said go and everyone went off. He made everyone come back and start off again. He does this to us about once a week. Alan, being Alan did it again "ready, set...." but never said go.... well Nat whispered Go loud enough for the student next to him to hear it and it sent the other student running across the gym, Nat stayed on the black line waiting, cracking up (so appropriate). I was dying laughing because Nat totally pranked another student.'Things heard at 4 p.m.Deep honk of horn"Gray bag, gray bag" (gray overnight bag forgotten at school)"Hou-ew-se" (house)"Mah-ee"... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2033267 Fri, 12 Dec 2008 21:03:00 +0100 2033267 http://susansenator.com/blog/2008/12/first-gig.html I got a phone call from the principal today, asking if the Baby Bellies would come down the hall to the cafeteria on Tuesday afternoon, where there will be a PTO/staff luncheon. They needed entertainment! So this means we have our first real gig!!!A gig means we must now have a dignified name. "Baby Bellies" is just not going to fly -- er, dance -- with my kiddos. So I made a quick call to my gorgeous, wonderful Lebanese friend from the Middle East Restaurant in Cambridge and he gave me some suggestions for our troupe name. Together we came up with: Raqs Layali al Lincoln (Nights of the Dance at Lincoln). I gotta think some more about this... (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2033268 Fri, 12 Dec 2008 19:41:00 +0100 2033268 http://susansenator.com/blog/2008/12/all-set.html All the world is a stage.--ShakespeareI had a great idea for the set design for the Baby Bellies Recital on Tuesday, so I'm still here instead of at the gym. So my idea is to use tiny Christmas lights (left over from our Halloween decorations) and create pyramid shapes or Arabesques against the back of the stage. Then I will take four veils and pin them in a tent shape in and around the lights. I heard from the office secretary that there will be some scenery left over from a morning Christmas concert at the school, so I will incorporate that stuff as well, unless it is horrendous.I might have to ask the custodians to help me pin things up. I hope I can sweet talk them into it, or at least lending me a ladder.I have made a little sketch to guide me, and hereit is: (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2033269 Fri, 12 Dec 2008 14:45:00 +0100 2033269 http://susansenator.com/blog/2008/12/lucy-moment.html ...I'm especially mad at stupid jumpropes. --Lucy Van PeltMy sadness converted to rage today. I don't know why. If depression is anger turned inwards, then anger is sadness stripped of its piteous garb. Which comes first? I was driving around honking and shouting (inside the car). Everyone was making me mad. I called no one back, except my sister. I wanted to delete my entire blog, or write a totally angry post. Sometimes when I feel that way I just have Ned take it down for a while, so that you'll get NOT FOUND when you click on me. Sometimes it makes me feel childishly happy to thwart people that way.You see why I needed to get out of my cage. In an effort to expel some of the poison, I did a drenching workout, 3 miles on the stairmaster, (how do you climb three miles of stairs?) which a... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2033270 Fri, 12 Dec 2008 03:25:00 +0100 2033270 http://susansenator.com/blog/2008/12/what-is-to-be-done.html The House called today to tell me that Nat was sick last night! He stayed home all day. I wondered about coming to get him. Ned said that Nat would probably not be comfortable riding around, plus with the rain and all. And of course that's not how it's done. The House is supposed to be his home now. They'll take care of him. They gave him some soup and some ginger ale.That is kind of what I'd do. Plus a lot of hovering and feeling his forehead to judge fever intensity. Asking him, "Sweet Guy, you okay? How do you feel?" Kisses all around. I've been thinking a lot about this whole thing, as you know. I think one of the problems here is that I have not committed to the idea. In my heart, I don't want him to be there. I don't want this to have to be the better choice, thinking of his future. ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2027202 Wed, 10 Dec 2008 21:02:00 +0100 2027202 http://susansenator.com/blog/2008/12/call-po-lice.html Shoot. One of the Baby Bellies today said she "might" have lice. I did not let her trade veils today (which they always always do). She was so subdued, poor thing. She is usually just a total bubble of a person, a firecracker, a butterfly. I don't know if she was worried or if she picked up on my worry? I've always dreaded the lice thing, though so far, none of the boys has had it, knock wood.She must not have been too disheartened by it because she did keep interrupting me as usual to say things like, "Let's be like Cinderella and..." or "Can we wear lipstick to the show?" I tried not to get too crabby (like, I didn't say, "How 'bout we wear fat little white parasitic insects on our heads?") It is like herding cats with the BBs, and next week is our show. A lot of pressure. I even talked ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2027203 Tue, 09 Dec 2008 23:32:00 +0100 2027203 http://susansenator.com/blog/2008/12/baby-bellies-choreography.html Choreography for Baby Bellies Recital, Tuesday, 12/16, 3 pm. Auditorium"WARDA"String Intro: Turn veils around oneself in the "wind" pattern.Drums come in: Hip slide right left. Hip slide right left.Violins come back: Big hip circleSaidi Rhythm: Hip lifts in placeClarinet: Snake arms holding veil (4 each), jump 1/4 turn right. Repeat until you have completed a circle.Fast strings: Shimmies and hip bumps, 2 to each sideAiry flute: 2 complete Flat Hip Figure 8's (hip movement parallel to floor) while folding veil.Flute and drums: With veil folded into the "pocket," camel (full body wave and walk) your way towards the center of the circle, then out.Sharp drum: lift veil high over headFast strings: grapevine to left in a circle, one way, then the other way, two times each with veil aloft behind... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2027204 Tue, 09 Dec 2008 18:26:00 +0100 2027204 http://susansenator.com/blog/2008/12/going-under.html I don't know how others bearThe pressure of a breaking heartThe way it was soft full and readyIt was so bigYou think it can hold it allBut it can't.It breaks. It turns into shardsThat float in your bloodlike oil on the sea, killingOnly a matter of timeBefore you drown in it. Or others do.Charybdis roars and whipsCentrifugal, CentrifutileAnd he's already goneA riptide of time and nerve cellsThat clumped and didn't branchA limp limbic that could not swimI stand on the shoreNot supposed to go inHope that there's a boatOr even a kindly whaleMaybe Gepetto's insideHe'd like that. (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2013671 Thu, 04 Dec 2008 21:33:00 +0100 2013671 http://susansenator.com/blog/2008/12/born-to-no.html Here is a poem sent by a friend of mine, which he wrote during a long flight somewhere. Tim does not have a special needs kid of his own but you could say that he actually has millions of them. I'm publishing it here, with his permission, because I think he really gets it.Born to NoMystery rush inI want to catch someAs I sit in the bleacher near a rough sod trackAnd the lanesDivide the field into narrow lines telling each runner, "Stay in."I sitNot alone but not a part of the mothers and fathers andBored brothersand sisters waiting for their turn To cheer sister specialThere she is now,Making her way to the starting line12 years old and not made for gloryBorn into tears"No Ma'am. The Baby is not all right."Born into struggleNo walking at 1No talking at 2No playdate at 3No school at 4"No Ma... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=2005920 Mon, 01 Dec 2008 20:38:00 +0100 2005920 http://susansenator.com/blog/2008/11/my-thrills.html I have no other place to put this and I am tired of sending myself emails. But I need to remember, because I keep forgetting and slipping away. My apologies for being cryptic. 1) Bellydance2) Clothes shopping3) Dinner out with Ned4) Dinner out with Ruth5) Small dinner parties like the one with Brian, Sha, Colleen & Andrew6) Galas/fancy dinners like White House one and the one at the Pierre where I met Meryl Streep7) Planning a vacation8) Driving to Connecticut to see M&D9) Start of Chanukah10) Baking special food11) A new book idea12) Entering class13) Laughing with Laura14) Walking on, forward15) True improvement in Nat16) Attaining slimness17) Expressing real love to Ned18) Real spring19) Planning a party20) Getting published somewhere great21) Coming up with a really good joke22... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1999143 Mon, 01 Dec 2008 00:48:00 +0100 1999143 http://susansenator.com/blog/2008/11/hoarse-whisperer.html One of the things that happened this holiday is that Natty got laryngitis. It is kind of funny, I have to say. He does his silly whispers, as Ned calls it. But Ned is also afraid that Nat will just continue to whisper, even after he's better, because maybe it just feels better to him. He seems to love doing it. I also noticed that his flapping has become more frantic, more copter-like, in inverse proportion to the sound of his voice.Even with his slight cold, Nat seemed to enjoy Thanksgiving. Grandma Shelly kept loading up his plate with all of the turkey bone parts, and he kept eating and eating. Nat's ability to eat and not gain an ounce is legendary in my family. We have never heard of such a thing, so watching Nat consume food is kind of a miracle to behold. We can't stop ourselves fro... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1999144 Sun, 30 Nov 2008 00:29:00 +0100 1999144 http://susansenator.com/blog/2008/11/my-universe.html Earth-treading starsthat make dark heaven light-- William Shakespeare, Romeo and Juliet ... See my Tabblo> (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1990898 Wed, 26 Nov 2008 02:13:00 +0100 1990898 http://susansenator.com/blog/2008/11/life-tarot.html I don't know what to write about, but I got that feeling so I know I'll just start typing and there it will be. I start by setting out my life cards, fanned out in front of me, and I look at each of them, scanning for the sticking point. There are cards representing all areas: family, work, friends, tsuris. I used to read Tarot cards for fun. If this were a Tarot reading, probably the last card would be the Seven of Cups.Let me lay them out one-by-one and see what I've got.Ah, the Ben card: up last night at 5 totally congested. I showed him how you should blow your nose (really hard, one nostril at a time) to clear out, and he said, "But I'm afraid it will make my nose bleed," and before I could respond, I looked down and saw my blood-filled tissue. Noseblower, heal thyself. Ben slept like... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1990899 Tue, 25 Nov 2008 14:12:00 +0100 1990899 http://susansenator.com/blog/2008/11/joyful-boys.html The 5 K Gobbler race for Best Buddies was a lot of fun, despite weather in the mid-20's. I had outfitted Nat head to toe, with state-of-the-art running gear from Marathon Sports, but still he ended up wearing his down jacket the whole time!When we got to the school where the race was to start, Nat bounced out of the car, in Special O mode, and it was Joyful Pre-Registration Stompies all around the gym until the race started. His smile never quit. His entire House showed up to cheer him on, with signs and treats. His team finished all together, a decent time, but Jack (the Residential Director with Nat in the pic) has already upped the ante and is now aiming for them to have more competitive times, and so they will be doing more races this winter! Note Nat's smile and blurry left hand -- th... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1984968 Mon, 24 Nov 2008 12:17:00 +0100 1984968 http://susansenator.com/blog/2008/11/rest-is-best.html A loved one recently had a baby and this made me remember the particular issue of newborn-feeding. Before Nat was born, I was so determined to breastfeed because of all that I had heard about it, that I went to La Leche League pregnant. I knew everything about it, all the benefits, the positions for holding the nursing infant, the convenience, the transmission of your immunities to the baby, the weaning, etc. I heard, for the first time, the anti-vaccine hysteria, the fears that moms had of putting "those germs" into "these pure, perfect babies." Even back then I did not agree with that sentiment, and this was way before anyone was connecting shots with autism (other than Andrew Wakefield). I did not agree with the anti-vaccination mentality, but I did agree that Breast was Best. That's w... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1984969 Sun, 23 Nov 2008 13:11:00 +0100 1984969 http://susansenator.com/blog/2008/11/obsessing-about-obsession.html No matter how busy and fulfilled I feel day-by-day, I still have pockets of time that trouble me. I fill those pockets with obsessive thoughts, which first please and then plague me. Although I no longer struggle with full-blown OCD, I still have difficulty staying in the present and then moving gently forward. I still get stuck on things that happened, which then keep my brain tripping over the details. Sometimes I think I'm looking to relive what happened, sometimes I think I'm looking to redress what happened. (You could argue that writing this in my blog further exacerbates whatever occurrence I'm hung up on, but I find it helps me make sense of it and thus purge it. I don't know why it has to be public, however. Everyone in my life asks me that: how can you put yourself out there like... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1980902 Sat, 22 Nov 2008 11:32:00 +0100 1980902 http://susansenator.com/blog/2008/11/special-deliverance.html His mother cried and held him tightHis father asked, "Are you alright?"-- Maurice Sendak, PierreI stand at the door, peering at the empty road, frowning at each car that is not it. My hands stuck to my hips, I'm a slimmer, darker version of Grandma, stocky and pink, teased and glued yellow hair high above her head. Grandma used to watch for us to arrive; you could practically see the waves of impatience shimmering above her head.I am watching for Nat's white van, having just talked to T on the phone about the week at school. This is a ritual I enjoy, even though I hate it when my phone rings, a vestige, perhaps, of sensory issues of my own. But when T calls, I just have to listen for the most part, and then compare my home experience with Nat to hers during school. Home, school, and House ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1980903 Fri, 21 Nov 2008 21:19:00 +0100 1980903 http://susansenator.com/blog/2008/11/seeking-autistic-wisdom.html I am now calling for advice for parents, words of wisdom and encouragement and honesty (all or some of the above), from ASD adults, whether you are parents or not. Obviously one can't generalize or apply all advice to all cases, but I'm sure there will be some important messages you'd like to convey to autism parents, along the lines of Amanda's video or Jim Sinclair's "Don't Mourn for Us." (In fact, if anyone can forward this to Jim or Amanda, I'd love to contact them myself, if that's possible.) I am also interested in resources from ASD adults, whether blogs, books, or associations or organizations that have felt helpful, empowering, and/or informational to you; also conferences (like Autreat?) that parents can attend to help them feel less confused, and more able to nurture and to pare... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1980904 Fri, 21 Nov 2008 13:37:00 +0100 1980904 http://susansenator.com/blog/2008/11/you-dont-need-to-blend-in.html I was working on the last chapter of my book, where I talk about parents' recommendations for the future, and a young man with Asperger's wrote to me, asking if I'd like his opinion. I am so glad that he did that, because it got me thinking again about Nat and wondering about the world from his perspective. I guess I had been thinking about how stimmy he has been lately, and I was now feeling a little guilty about letting him be that way. You know, aren't I supposed to be trying to make him as "functional" as possible? To blend in? For that is what I've heard many times, from educators and others.And suddenly, after reading what this young man wrote to me about how nonverbal autistics need more tools to help them communicate and to help the rest of the NT world to understand them, I was ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1975227 Fri, 21 Nov 2008 00:03:00 +0100 1975227 http://susansenator.com/blog/2008/11/future-is-ours-to-see.html What would make your life work better? What would help you the most, in terms of autism in your life?I dug back into my book today, and I have to say I really like how it's turning out. I love all the different people I have woven together chapter-by-chapter; the differences and the common denominators. It blows my mind how much we all have in common, and then again, how sickeningly alone we can be in this life. Now the questions that keep popping up are: What should research and government put their energy towards? What is most needed in the coming years? What is most needed now? Why? How does your answer relate to your own life?What would you like to see scientists focus on the most, about autism?Where would you like to see money going, whether raised by private organizations or made ava... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1975228 Wed, 19 Nov 2008 19:11:00 +0100 1975228 http://susansenator.com/blog/2008/11/life-and-death.html In this unusual November, where leaves stayed on the trees halfway into the month, a week ago we wore tee shirts but today there will be snow, my (extended) family has experienced a birth and a death. On November 6, my nephew Willy was born, a beautiful squishy sweetheart of a boy. Ned's sister Sarai is a (first-time) Mommy of this wonderful new life (she and Ed were married 2 1/2 years ago). They seem to be doing well (enough), and at the time that I have written this I did not find out if I can post pictures. And yesterday, Ned lost his 97-year-old grandmother, Victoria Marcus Olds. Ned is named for her (his middle name is Marcus, which is her maiden name). Grandma O was quite a dear person, lively and bright, warm and loving. She felt like a grandma to me right away; she was very easy t... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1975229 Wed, 19 Nov 2008 11:46:00 +0100 1975229 http://susansenator.com/blog/2008/11/for-nats-party-we-had-total-of-sixteen.html For Nat's party we had a total of sixteen kids, and various adults. Everyone bounced in the Moonbounce, which listed and sagged a lot because we were far exceeding the weight, age, and number limit. But we have found that those Moonbounces are kind of indestructible, as, apparently, is my house. After everyone had had their bounces' worth, and then a piece of the cake (which was a blue van on a road, because a lot of Nat's friends really love their vans), I invited everyone to come into the house.I had not planned an indoor party; indeed, I had not planned much beyond the Moonbounce and the cake. I didn't even have food offered! (Adults standing around with nothing to eat! What would Mom say? But I did have lots and lots of orange soda and Sprite! Still, I think I heard a groan of shame ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1968960 Mon, 17 Nov 2008 12:07:00 +0100 1968960 http://susansenator.com/blog/2008/11/post-22-sword-of-damocles.html I still do not know what to do about my missing Nat so much. This feeling makes me want to bring him home, take him out of there, even though they seem to love him and care for him well. It has nothing to do with them. It is about me, and this unresolved pain. I can't stand it. It still flares up, every single day. Planning his birthday is especially hard. Thinking about Chanukah, and what to do for the eight days. Wanting him home, then seeing him just lie around on the couch when he's here. Sometimes I do not know where I end and Nat begins. I cried to Ned last night, lying on his shoulder, the best bed on earth. "I want him back, I was wrong to send him away," I said. "Can't I have him back? We promised each other that if one of us was unsure..."Ned waited a moment, as he does, measuri... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1960832 Fri, 14 Nov 2008 00:25:00 +0100 1960832 http://susansenator.com/blog/2008/11/blessed-are-weak.html As a parent, I am not much into force. But sometimes I am able to push just a little bit if I believe there will be some real growth involved. I actually do not do this nearly as much as Ned does, and not nearly as much as I ought to because I tend to get weak in the moment. I forget suddenly what all my good reasoning had told me, and I just do the other thing. In that moment of lapse, it is as if I never even knew about all the other information that I had, or the experiences that have built up my stores of knowledge. I just see the sparkle of something bright and I lose my head.I have always tried to honor my sons' rights to their own, unique lives, but I have often made a mess of it. In trying to do "the best" for Nat, I would think and think and think and observe and read, and then I ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1955306 Thu, 13 Nov 2008 11:15:00 +0100 1955306 http://susansenator.com/blog/2008/11/simply-positive-can-be-negative.html I posted a question yesterday on one of my autism email groups (which consists of autistics and non-autistics, some of whom are also autism parents). I was wondering, as I often do, about how we figure out who are children are and what they are feeling. How much is projection, and how much is observation/reality? This question applies to any of one's children. But I was especially thinking about Nat, and how I have come to think of him: as my Innocent, my Good Egg/Hard Worker, and my most Spiritual Child.It was fascinating and illuminating hearing back from some list members. What I heard was that although it is harmful to cast your child in a negative projection/concept, e.g., a "Devil Child," my "Bad Seed," "Brat," etc., it is just as harmful to cast your child in a simply positive proje... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1955307 Wed, 12 Nov 2008 15:59:00 +0100 1955307 http://susansenator.com/blog/2008/11/escape-from-my-head.html This is a day off so I have time on my hands. That can be an ugly thing for me, but it can also be fantastic. I am soon going to rake leaves in the sunshine with Max and Ben, and that will be lovely, plus it counts as an exercise (according to my number one exercise resource, Dad). The only thing that would be better than that would be to have Nat here for the raking. He is a total leaf workhorse. He rakes and rakes and he bags and bags. He doesn't need to stop to jump into a pile. I know I'm idealizing it; there were so many times when he would just stand there moving the rake up and down and not accomplishing anything. Other times he would have screamies or tantrums but when we told him he could just go inside, he'd scream more. Well, he is just not like that these days, and I know he'd... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1951992 Tue, 11 Nov 2008 15:18:00 +0100 1951992 http://susansenator.com/blog/2008/11/other-conversation-in-my-head.html Nat keeps sounding tiny and spacey on the phone when he calls from the House. The staff told me that the only decent phone is in the livingroom, where there is a lot of noise. I keep forgetting to go and look at the phone setup when I'm there. When I bring this up to Ned, he talks about buying the House a really great phone, one which could be moved to a quiet room. That would be a solution to the specific problem of being able to hear Nat better, and get him into a quiet space. But to me there is a bigger problem: the way that I feel when I hear Nat's little, spaced-out voice, which then makes me wonder how he is feeling.Maybe I'm projecting, you might be thinking: You are layering onto these conversations your own feelings of missing him and self-doubt. You would be partly right; how cou... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1951993 Tue, 11 Nov 2008 12:21:00 +0100 1951993 http://susansenator.com/blog/2008/11/sugar-sugar.html It is way past Halloween, and this post may seem as stale as your kid's bag of leftover Mike-and-Ike's and Milk Duds. Nevertheless, I have consulted on the matter of candy with all three of my sons, who are Sugar Addicts, marking their favorites so that I know how to properly reward and indulge, and I have taken stock of my own corn syrup proclivities. All of this is to completely rebut this particular blog, where one blogger claims to have accurately found the ultimate Candy Hierarchy.He lists at the very top, the top, mind you: Caramel-based candy. Okay, that is just wrong. Caramellos? Please. Right up there with the aptly-named Milk Duds.He puts chocolate-based candies second. Second! Most women of the world would disagree right there. Come now, we all know that chocolate is a magical e... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1947293 Sun, 09 Nov 2008 21:40:00 +0100 1947293 http://susansenator.com/blog/2008/11/little-big-social-group.html The boyz have been playing Little Big Planet, which is the cutest and most fun PS3 game on earth! The character are sack puppets, kind of like brown hackysacks with arms and legs. They move like stuffed dolls but also are animated like cartoons. Adorable. We all just laugh and laugh as we send our characters on rocket rides, have them dodge waterwheels and flames and spikey bridges. They get whipped around and battered by the winds of fate and yet they hold on somehow with their little fabric hands. Mine kept dying yesterday and eventually I put down the controller before anyone else got hurt... I think Ben was relieved. I was, too. My continued epic fails were starting to give me that feeling I used to get when Laura was beating me at a game. (When that feeling set in, I would eventually ... Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1945333 Sat, 08 Nov 2008 11:51:00 +0100 1945333 http://susansenator.com/blog/2008/11/know-vember.html It is the beginningof your timethe end of fallthe start of your lifeYour adulthoodYour childhoodmass together in the leaf pile on our lawn.The death of the lightThe Dementor weather, clammy and suckingAre you feeling all of thisHas it sunk in yet that you are thereNot hereDo you understand "forever?"It's not foreverBut I don't know if you knowI still don't know what you knowI only know that I wishI wish I wish (Source: Susan's Blog) Susan's Blog blogs http://www.medworm.com/rss/comments.php?id=1939218 Fri, 07 Nov 2008 11:52:00 +0100 1939218