Susan's Blog

Wednesday, January 9, 2008

Yoga/Bellydance Workshop

YOGA and BELLYDANCE !
An afternoon of fun for moms of special kids

You do so much for others. You adore your children and you advocate and care for them tirelessly. Isn’t it time you gave yourself a gift? How about an afternoon especially for you and other moms of special needs children? Here’s an opportunity to get in touch with your inner Goddess while having fun! In this workshop:

  • Work with breath to calm body and mind
  • Experience the intrinsic beauty and grace of your body moving to the rhythms of an ancient dance form.
  • Improve body confidence, posture, and poise
  • Enjoy a deep relaxation
  • Instruction is for absolute beginners – bare belly not required!
  • Get a fun workout, too!

With: Bellydancer Susan Senator and Yoga teacher Melinda Coppola
Where: Neponset Valley Yoga 153 Washington Street, East Walpole, MA 02032 (not far from Dedham), 508-668-7780 http://www.nvyoga.com/directions.php
When: Saturday, March 15, 2-5 p.m.
Fee: $15
What to bring: Water, and a colorful scarf to tie around your hips. Wear comfortable clothes you can move in, layers are good.
Sign Up: Register by March 1. Please call Melinda at (781) 551-8254 for information including where to send fee.

Melinda Coppola, Spectrumyoga@aol.com, is a registered and certified Yoga teacher, and a mother to a teenage girl with autism.
Susan Senator, susan@susansenator.com, is a bellydancer and writer who gives workshops on living with disability and is the mother of three boys, the oldest of whom has autism.

With special thanks to the South Norfolk County ARC and Family Autism Center for their contributions to this event
Tuesday, January 8, 2008

And Now A Word From The Goddess

Here is a little piece of Heaven that floated my way, from a certain website that is my Enabler

Many of you who read this blog perhaps feel disappointed or frustrated by the breaks I take from autism, advocacy, etc. I am diseased-to-please, so I feel bad about disappointing people. I’ve always been that way, from birth.

So why can’t I just keep it to myself? Because I just crave the written word. I feel such a pink, sugary pleasure just by writing about bellydance. If I could, I’d always be doing it, I’d be much better at it, I’d perform, etc., etc. It just takes my mind and wraps it in pink satin and chiffon.

Thank Heaven…

One of my sinful secrets is that I love the movie Gigi, with the beautiful dancer Leslie Caron. It is pure fluff, but so much fun. The Fin de Siecle, Hollywood-style costumes alone are worth the rental. I love the way Gigi just grows up overnight, and the dashing Louis Jourdan falls for her.

So, at the risk of sounding like Maurice Chevalier, I have to talk about little girls. I just finished my first class of Session Two Baby Bellies, my after-school bellydance class at our elementary school, and I am on La Nuage Neuvieme. There are now seven girls in my class, all first and second grade, and I am just in love. I think that sometimes when God gave me– well, not lemons; let’s say crisp tart apples — I have made apple pie, let alone apple juice! But you also really appreciate summertime peaches sometimes. Am I making sense, or do I sound like fruitcake?

They are so up front, no-bullshit, about how they feel. They are also all over the place, rambunctious, chatty. One of the girls sat down next to me and said, “I get to sit next to you!” Another, at the end of class, said, “I want YOU to teach me how to bellydance!” And the same old questions, from the new girls: “Is that you ? (It was Ansuya, God bless them! See below)” And “Why do they wear that?” (Because it’s pretty!) “Do you always have to be skinny like that?” (No, that’s why it’s the best! I’m not skinny like that!)

I got through very little material. They did learn two isolations and some veil work, and a basic Egyptian shimmy, however. But I had to turn off the music because there was just such noise!

I find I have to be firm about what we’re doing, the rules, the goals, and such, “Okay, you guys, now get in a circle. Everyone, try raising your arms like this. This is called…” And so forth. They loved the little hip scarves I had bought and the veils, just their size. They wanted to keep them, and I had to tell them that they cost money! “Why?” a few of them asked. Why indeed.

Monday, January 7, 2008

I No What I Know

In Plato’s Apology, he writes that Socrates claims that a wise man is wise in that he knows that he does not know. I think the truth here is that we all think we know something, and no matter how hard we try not to become closed by what we think, still it happens that we make assumptions, and we are sometimes dead wrong.

I have been thinking for months that I want to be a bellydance teacher to disabled girls. I had a feeling, I suppose based on my experiences with Nat ten + years ago that mainstream places which offer extracurriculars like art, music, and dance, were in fact often less than accommodating when it came to my boy. I developed an inner certainty, based on this experience, and on the fact that there were organizations like KOALA in my area, which stands for — I forgot — but which was an organization that would come in and teach extracurricular organizations how to include guys like Nat effectively. I never did apply to KOALA; I only heard that they did wonderful work — through the ARCs — in getting places like your local art center or music school to accommodate properly.

It always seemed like a huge task to me. To have to apply for such a thing — how long would it take to come through — and then to hope that it would really do what it promises. And then, by the time it all shakes out, would Nat even still be interested in the art or music activity? I quit before I even began.

This did not mean I gave up; instead, I formed my own alternative groups, like a special needs soccer team. And then I found alternative groups like Special Olympics, and Alternative Leisure/Trips Unlimited (a privately run group that takes special needs kids on outings). I liked the solidarity found in these separate groups, I liked the way we did not have to apologize or feel extra grateful that they allowed Nat to be a part of things. (I hate, absolutely hate, having to ask the world to do me a favor and put up with Nat, when really, he is such a good kid with so many good qualities; they should be trying to get to know him even if some of his issues are hard to deal with. He’s never rude like so many of his typical peers; he is willing to try new things, also unlike many of his peers.)

In terms of inclusion, I have ever had a chip on my shoulder. I want to see great examples of places that include without an attitude of “we’re doing this wonderful thing for you, poor Special Needs Mom, be grateful, while you pay an additional $100 for an aide, as well as the cost of our fantastic program.”

So I wanted to make my Baby Bellies class at the school fully inclusive. I went into the substantially separate classroom and told the teachers that their kids were welcome. I emailed and talked to friends with autistic children and urged them to come to my class. Then, I went up to a friend whose kid has some intense physical disabilities and told her she should consider the class. I was so excited when she said her child would! I felt proud of myself, for offering a truly welcoming environment for these kids who are so often left out.

But so far, none of these have signed up! When I inquire, they all tell me it is because my class conflicts with after school therapies. Or harried lives. And I checked in with that friend the other day, and she told me that her child would not be taking my class! “Oh,” I thought, “is the child nervous about taking a physical activity with non-disabled kids? Is she afraid of being different?” I wanted to explain that in my class, unlike so many others, all kids would be welcome and helped!

Then the mom explained, “It’s just that she’s got so many other things going on, soccer, basketball… She really thinks of herself as a jock rather than a dancer. But thanks!”

I had to laugh at myself. Even when you think you know, you don’t always. Meanwhile, I have seven kids signed up. There are three new girls coming in, who I’m sure will present me with their own delights and challenges, even though they do not come with IEPs!

Sunday, January 6, 2008

That Old-Time Propaganda

Sometimes, that which is old can become new again. And sometimes, that which is old is just plain old. Today, as in most weekends for the last six months or so, Nat became very anxious because of a neighbor’s outdoor light being on, and Max and Ben still not down for breakfast. The yelling and the vicious arm-biting ensued, but I tamped down my natural responses of fear, sadness, and worry to present Nat with the much-vaunted neutral bearing of the positive reinforcer.

True to my ABA rearing, (the positive reinforcement of little steps that lead up to one larger goal. In this case, staying calm in the face of great anxiety. This is not a great strategy for teaching many kinds of skills, such as those involving conversation, or the joy of socializing; however, like many educational approaches, ABA has its uses, in terms of teaching more concrete skills where the teacher’s expectation is a clear and obvious one that can be easily rewarded and encouraged.) I offered a bland, emotion-free schedule of what was and would be going on, with no accommodating his demands, which are — let’s face it — a little bit unreasonable. The sooner one learns that one cannot control too well what others do, the easier ones life will be, no? E.g., Max and Ben should be able to sleep late and eat when they want on their days off from school; my neighbor cannot always be expected to shut off her light at daybreak:

Nat ate breakfast
Mom and Dad ate breakfasts
SOON Max and Ben will come down and eat.

Nat can sit on the couch and watch a movie.
The outdoor light is on and will be off later.

Upon reading that schedule, Nat said, “Noooooooo,” and scratched it out with a pen!

It is the end of a era. Our Nat Book Propaganda no longer works! Hallelujah! Or help!

Saturday, January 5, 2008

Keys To The Universe, Encore

Here are some great things that do not fail to make me happy. Most are shallow and consumer-oriented but who cares? If they make you feel good, isn’t that worth a blog post?

1) Princess Farkhana. She is a free spirit bellydancer, full of fun and playfulness. There is a movie coming out about her, in March, called Underbelly, and you can be sure I’m going to see it.
2) Aerolatte miniblender. It creates a latte or a misto or a capucino without the expensive machinery. Heat up a tiny bit of cream with Splenda, froth it up, and gently pour the coffee in and you have yourself a great afternoon treat. Mom bought it for me because she knows how I likes my coffeez. Thanks, Mommy!
3) JCrew right now (January 2008). The colors are as beautiful as a rainbow, and the styles and cuts are forgiving.
4) Anthropologie sales area. They always have amazing sales, tons of stuff, towards the back of the store, and some of it just came out even last month!
5) Northeastern University job-listing service: I got tons of great students to hang out and work with Nat. Most of the students who go there are looking for real vocational experience while they get their college degrees. They are mostly sweet, dedicated, competent kids.
6) Shopping with a friend. What could be better, even if you buy nothing? Share a dressing room and it’s even more fun because you can trade off stuff and learn from each other how to wear new styles.
7) Whole Foods 365 brand salted almonds. A healthy fat, a source of protein, and a salt fix all in one.
8) Every now and then, a massage at my gym, or an occasional house cleaner. Take your pick, they are worth saving up for. Even once a year, you’ll be so happy right afterwards.
9) My shoe repair guy, on Alton Place in Brookline. He is a hardworking Armenian immigrant who always smiles, and fixes anything I bring in (I’m very hard on shoes), always done on time.
10) Old Seinfeld episodes. Even if I’ve seen it a million times, there is no show, I defy you to come up with a show, that is funnier. Today my friend said I was Elaine and I said she was Elaine, too. This was while we were feeling crabby about having to go all the way down to level B to park at the Atrium Mall which is such a small mall, with just the right stores, that I could have made it number 11.

Friday, January 4, 2008

Mostly Mozart

Pardon the cliche, but one of my resolutions, should I actually stick to it, is to try to enjoy my life as it is. I think I do a lot of wishing and fantasizing about what is not yet, or what should be, and I suppose that’s fine because it gives me something to work towards. But it is not fine if it blocks me from feeling good moment-by-moment. Of course one can’t always feel good, but I think I feel bad a lot more than is necessary. The official diagnosis is depression, but I don’t always accept that.

As I said yesterday, it was a good day. I felt strong and capable and creative. Nat came home from school and when asked, said that he had had a good day. I, of course, checked in the notebook because he might have just been saying, “yes” to get me to stop talking to him. Sure enough, it had been a really good day for him. In music they had studied Mozart. I don’t really know what that means, that they “studied” Mozart, but I’m sure it involved a lot of listening to the complicated themes and feeling how wonderfully they resolve in one of his pieces.

I asked him if he wanted to hear some Mozart, and of course he said, “yes,” so I asked him a few more times in all different permutations to be sure he really wanted this and would not just walk away when the stereo went on. And yes, he did mean it. I chose a flute concerto or two and a collection of “Greatest Hits.” He settled on the couch and sat through all of it, listening carefully. I wonder what he thought or felt. I know I think of Mozart as hilly music, that builds up pleasantly, and then glides down, in crisscrossing paths (like the bike path at Provincelands National Park on the Cape), meeting up at last in perfect resolution.

The flute concerti took me right back to childhood, playing in that yellow basement playroom, while Dad listened to Mozart and made candles or something like that. Dad knows how to live in the moment. Back then, he had a candle-making studio down there next to the washer and dryer, with a burner and all kinds of jars of scent and color, and large white blocks of wax. He loved to experiment with molds (half-gallon paper containers from milk, or foil-and-sand) and with stuff inside the melted wax, like ice cubes (the ice cubes would cause holes in the final candle!). Once he even made a candle in a coffee mug. It could not come out, and the mug would have to be broken, so we left it in there.

Another time, he made a candle shaped like a Poodie, which is a creature he created when Laura and I were little, kind of a guy with a round head and stick figure body and big ears and glasses (I suppose it was a cartoon of Dad, come to think of it!). The friend he gave it to set it on a windowsill and it melted in such a funny way, with the head all bent and stretched, along with the goofy smile. Candle Poodie still makes me crack up.

He made us tons of Poodie dolls. They were made of socks, with buttons or rubber bands. Each new grandchild got a special Poodie, too. The infants got Poodies that were only stitched, because of the danger of swallowing stuff. I think the Poodie-de-resistance was a goat Poodie, made because he discovered a goat several blocks away. We had all been wondering what was that weird, “Raaaaa” noise, and finally, on one of his jogs, Dad saw a real goat! In the suburbs of Connecticut!

While Nat and I played Mozart, I was not making candles or Poodies, but I was writing. I had my coffee and my laptop and my ideas. And that was enough. I was nourished enough to make dinner, and even helped Beastie do his homework with a light heart (homework really gets him down, but I think from now on I will make him do it right next to me so that at least I can joke him out of his funk when it comes over him). Kind of the way Wolfgang Amadeus and Precious and candle memories lifted me out of mine.

Thursday, January 3, 2008

The Winter of Our Content

Now is the winter of our [dis]content;
made glorious by this noble son of [York] Ned and Sue
–Bill Shakespeare, and me

This morning, in honor of a very good team meeting at Nat’s school, I post for you my column in the Brookline Tab. I feel that Ned and I did very well in expressing ourselves and representing our young man. Today is a good day.

Opinion: The winter of our content?

By Susan Senator/Edge of Town

Wed Jan 02, 2008, 04:31 PM EST

Brookline – The morning of the recent whopper snowstorm, I kept thinking about a phrase I’d read in a Laura Ingalls Wilder book: “The rich get their ice in the summer, the poor get their ice in the winter.”

Maybe this was because, rich or poor, we were all being hammered by snow and freezing rain here in the Northeast. But maybe it’s also because this phrase, which once had the power to charm me, just seems too simplistic for my life now. Things are not what they seem, most of the time. A rich family — or in our case, upper-middle-class suburban Bostonians — can get their ice at any time.

That frozen morning, my 18-year-old autistic son, Nat, extremely sensitive to weather and light, woke up sensing and dreading the imminent cold, snowy, gray day that lay ahead. Shifting climate conditions make Nat miserable, but I am at a loss as to how to explain nature’s inconsistencies in a way that will help him. Gray light — and for that matter, gray areas — are a real challenge for Nat.

That morning we were all hurrying more than usual, because Ben, my 9-year-old, had to get to his breakfast share at Lincoln, and his class was performing a skit, “Native American Cinderella.” Our harried state made us all less inclined to stop and soothe Nat, and explain, once again, about the seasons and why the days get shorter and colder. Eventually, he erupted into a terrible rage, where he was screaming, biting his own arm and clawing at us. My husband, Ned, and I struggled to calm Nat, while simultaneously trying to keep Ben safe, as well as excited about his role in the skit as Chief Shadow Gamer. I asked him questions about the Native Americans, all with a shaky smile and knots in my stomach.

Somehow, Nat got on the bus on time and we made it to Ben’s school. I took deep breaths to calm down and put the ugliness of the morning behind me, to shift gears, but I felt a little odd and out of place at first. The classroom was humming with happy activity, jammed with 22-plus costumed, chatty fourth-graders and their wide-eyed, enthusiastic parents. I took off my coat, sat on a desk and watched as the play began, and focused on the story, which was “Cinderella” told with an Abenaki cultural twist.

Watching Ben, who really chewed up the scenery as the Chief, I found I wanted to laugh and cry at the same time. Here was this child of mine, who just minutes before had been in a terrifying situation with his brother out of control. And yet he managed to walk in there and perform with his classmates as if everything was perfect in his life. To look at him, you would never guess where he’d just been, the turmoil he has had to live with.

As I looked around, I understood why he could bounce back like that. I noticed how the kids all watched for each other, and checked that they were performing correctly, saying the right lines. I saw the delighted student teacher standing off in the wings, giving direction confidently. And there in the back, and then the side, and now the front of the room, the breathless, smiling head teacher was skillfully overseeing all. The joy, the encouragement and the support there was palpable.

There, among the beaming parents and frenetic teachers, I felt the chilly lump in my gut start to dissolve. Like Ben, I felt that while in that classroom, I was among friends and that it was going to be all right. This warm place of acceptance and community, I realized, was as real a part of my life as the difficulties with Nat. There at home, I might feel at times like I’m living under siege, but here at the school, I am the proud mother of Ben, budding comic actor. I looked around me and I wondered who else might be feeling the way I was, what other hidden struggles were a part of these kids’ or adults’ lives.

The truth is, you never know what is going on beneath the surface — whether the ice is solid or paper thin. And yet, we could all sit together in Paula Reilly’s fourth-grade class on that wintry morning and feel like just then, we were having our ice in the summer.

Susan Senator is author of “Making Peace with Autism,” awarded the Exceptional Parent Magazine Symbol of Excellence. She can be reached at www.susansenator.com.

Wednesday, January 2, 2008

How Do We Know?

This morning, Ben came down in a snit over his hair. He has baby-fine, lanky hair and it becomes easily tangled and full of static. He also was blessed with all of my stubborn cowlicks, so he has it rough when it comes to hair. He has a definite idea of what he wants to look like, (so familiar) so it was not surprising for me to see the odd clump rising in the back of his head, and then his hand wrenching it downward (to no avail), his teeth gnashing in rage.

I did not notice Nat, hiding his face behind his cereal box, grinning broadly.

All I saw was Ben, over-the-top angry, spitting nails at everyone, and saying, “And if you so much as smile at me again, I will rip your face off,” or something like that, at Nat.

“BEN!” I said. “I know that you’re mad about your hair and sad to go back to school, but you can’t put all of your feelings onto Nat and everyone else! It is NOT his fault!”

“Yeah, but he’s laughing at me!”

I looked and saw that Nat was hunkered down behind the Lucky Charms, and was indeed smiling. Oh, what do I do, I thought. Nat is laughing at him, technically, but that is because he is giddy and nervous (in general) and because of Ben’s anger. It is not actually Nat’s fault that he is laughing —

But wait, I then thought. To Ben, Nat is laughing at him. Ben doesn’t recognize the subtle difference of someone who is disabled and anxious and prone to giddy laughter who doesn’t intend to upset —

And then I caught myself again. How do I know he doesn’t intend to upset Ben? Why should I assume Nat can’t help it, when I know that he probably is actually laughing at Ben, though far more innocently than Ben thinks?

Why split hairs? Ben thinks that I am sticking up for Nat over him, and in a way, I am! I would never tolerate Ben laughing at Nat if Nat were upset by something. Is there some way I can remonstrate Nat but still be fair to him, knowing that his autism makes the situation subtly different in intent, but not different in appearance and outcome?

Here are the facts: 1) Ben is angry already, from having to go back to school, and having crappy hair.
2) Nat is laughing — and at him — but not because he thinks Ben looks stupid. He is laughing because of Ben’s anger vibes.

Was there a way I could discipline Nat that would be fair to Nat and teach him what was right, but that would satisfy Ben?

So I said, “Nat! You don’t have to laugh when you know Ben is upset!”
Nat said, “Yes,” and his voice slid down into a soft giggle.
I tried again. I said, “Nat! As the big brother, you should know better not to laugh when someone is upset.”

This time Nat was quiet. But he looked at me and something flashed in his eyes, something like, he was surprised at me. Something a little shocked, that seemed like he knew I was sacrificing him a little for Ben. This fear weighs especially heavily on me now, because tomorrow we are having a meeting with our educational team about putting Nat on a waiting list for housing at his school. He’s eighteen, he’s eighteen, I keep telling myself. But.

I checked in with Ben a little later, to see if what I had done had been worth it. Still angry, he said, “He’ll just forget it in five minutes!”
And I said, “Yeah, maybe, but that’s not his fault. That’s the disability, see?”

I don’t know if I did any good at all.

Tuesday, January 1, 2008

Happy New Year

This sez it all. As so often the i can has cheeseburger-lolcats do. Let’s remember what’s important for 2008.

1) Loving our children for who they are
2) Loving ourselves — if you truly do, all else emanates from there.
3) Helping wherever you can
4) Not being part of the problem/don’t be that guy
5) Bellydancing (oops, that just slipped in there)

Monday, December 31, 2007

We’re Baaaaaack


Tabblo: Vacation in San Juan

Friday, December 28, 2007

How I Get Ready To Leave

Because I am sometimes viewed as a resource for others, (me???) I am posting this for your use when you go away from your kids (you’d better try, if I’m going, you can go!)

(Note, just because I have done everything that needs to be done — including hiring a buddy for Nat halfway through, to give our respite worker a break and to guarantee Nat some fun — it does not mean I feel good at all about going. I have had dreams about killers, etc., that my boys were in danger. 🙁
But I believe that once I am at the hotel, on the ground safely, and I’ve called into the boys, I might, just might, be able to relax ????? with Ned???????? really????????)

So here’s what I’ve done to prepare for my vacation away from the boys, aside from all laundry, and buying all favorite foods:


Tabblo: Mom and Dad are going away

…And I typed up this note for our respite person, plus all pertinent phone numbers, plus our itinerary:

Hi!
In case I don’t have time to say all this!
Also, could you get here 5:30 a.m.? Yikes, it’s early but I’m afraid we’ll need some time, I don’t know what Logan will be like.

In the morning:
Nat gets up first. Dresses and comes down and sits on the white couch. Sillytalk is fine, but running around and muttering to himself kind of quickly means he’s anxious.
***If he’s anxious, it’s probably because there is an outdoor light on somewhere. Our neighbors are used to our calling and asking them to shut their outdoor light during the day for Nat. They love him! You can call M, our neighbor in the mauve house, on XXX St, and she will turn it off. XXXXX is the neighbor in the tall white house bordering our driveway (and M’s) and he will also turn it off or tell you where to turn it off (or I will before we go). Numbers on blackboard. Remind him that the lights will go off soon.
***It might be because Max and Ben are still upstairs. You can remind him that Max and Ben will eat their breakfast when they come down. Max will have cereal, so will Ben. Nat likes to repeat what everyone is eating just because he likes to. It’s kind of a conversation with him, so if you can, you can even offer new information about breakfast, like, “I like to have toast. So I’m going to have toast, Nat.” He’ll like that Any time he is moderately anxious and talking about other people’s routines, you can offer information about them, engage him in talking about it, and he likes that.

(If you can’t remedy the lights, he might have to get a little screamy. The best thing to do is to completely ignore so it blows over, even if he is biting his arm. Ignoring is the only way that the escalation slows down, once he gets to that point. He gets more upset if you get upset. Try to gently distract him with a task (empty dishwasher silverware) or a video. I would say, “Nat, you can watch a video.” or “I feel like watching Sleeping Beauty, you want to?”)

When Nat gets screamy, Ben hides in his room. That is probably okay. Better than if Ben snaps back at him! Just keep all of you safe.

(If he seems very very anxious for a long period of time, in extreme situation, God forbid, give him half tablet of the clonipin in bottle over sink. It is a sedative). You can page Dr. M if you have questions, phone number in blue pills box.

Nat could have a bagel or dry cereal (no milk). He only needs a little help prying the frozen bagel apart. He can do the rest.

Ben and Max get their own cereal. If Ben asks for a bagel or bacon, that’s fine.

Lunchtime:
I like them each to have a piece of fruit (clementines are easy). Nat likes the dark red kidney beans, 1/2 a can a day. Rinse them in the colander to get the liquid off. He will take his own spice (a lot!). Save the other 1/2 in a tupperware container (bottom middle drawer in island).
Ben could have Cabot white cheddar (not half-fat!) with crackers, or green apple with creamy peanut butter.
Max will take his own.
They all like strawberries with sugar.
Any snacks they want, just monitor Nat’s cookie intake.

Nat has meds in Evening slot at around 4.

Dinnertime:
You could order pizza from Pizza Stop. They deliver. They know us. Nat and Ben share a large pepperoni. Nat does not eat the cheese, it’s okay. He eats a ton of pizza! Ben only has like one piece. Max has most of a plain large. Maybe carrot sticks for them, too.

Day two dinnertime: 2 beef franks for Max, roasted at 350 hardly at all; 2 turkey franks for Ben, same. 2 chorizo sausage for Nat. Pasta with butter, carrots.

Showertime for Nat, he is independent with this.

Usual bedtime routine.

Wednesday, December 26, 2007

Christmas 2007

Monday, December 24, 2007

Have Yourself A Merry Lightless Christmas

A Merry Lightless Christmas
–Attributed to Nat and written with love and understanding and a little devilish humor, by me

Have yourself a Merry lightless Christmas
Shut that outdoor light
Cause it’s hard for me to keep it out of sight

Have yourself a Merry lightless Christmas
Though right now, I’m screamin’
When this pic was taken I was really beamin’

Here we are as in everyday
When your light is on, I rant.
Faithful parents who are dear to me
Say, “Nat Let it Be!”
But I can’t.

Through the years, I’ve learned to keep it together
As my neurons allow.
But your stupid light is making me have a cow!
So have yourself a Merry Lightless Christmas… NOW!

Sunday, December 23, 2007

She’s Makin’ A List(s)

Good
Bought Nat some winter boots so now they all have them
Bought Austin Powers 1 so can watch something with whole family
Made chocolate sprinkle cookies with Nat
Did not overeat chocolate sprinkle cookies
Was good to self even though bloated (not sure this one counts)
Supposed to go with Lisa to Middle East tonight
Bought pretty J Crew coat
Found great restaurant to go to in San Juan
Have a dinner plan for tonight
Worked a little on Dirt Manuscript

Bad
Blew off last bellydance class (for me, not Baby Bellies)
Forgot important appointment while baking with Nat
Had to buy groceries day before Christmas Eve
People really whacked day before Christmas Eve — either way too nice or too mean
Pretty J Crew coat impractical, bought instead of lumpy warm ski jacket for me
Hair atrocious — blew off salon appointment — will look ugly at Middle East
Might not want to go to the Middle East tonight — getting winter agrophobia/intertia
Max not here
Sister-in-law not coming to Christmas
Have 220 pages left to edit of Dirt Manuscript

Just Sledding You Know What’s In My Head

Lots of dreams, stuffed up nose, and the feeling that I didn’t actually sleep, but only effected some semblance of it. I have vacuumed down two mugs of half-caf already (it has to be half-caf because I like to drink so much of it) and my mind is ticking. I am taking in the day, gathering it at its soft white edges and trying to find its shape.

Maybe I can get the boys outside to sled. I really want to. We can actually sled in our yard, because of the gentle hill that starts at the neighbors’ line. We never leveled our lawn; no fancy grading here, I guess we failed in our landscape-perfection. But I love the slope and all the mature and overgrown spots that give the yard a real character, some texture and natural definition. There’s even a border of thick shrubs and low trees blocking us from the side street (we’re on a corner lot), that form a nice barrier when the sledding is particularly fast.

In my “sleep,” I dreamed I had volunteered at some town festival to bellydance. Only when it came time to go on, I could not decide which costume to wear. The real reason, I finally admitted to someone — Ned? My father? (What would Freud say about that question??) — that I did not want to dance in public. The person made me feel like that was okay. I had had that conversation with Ned just yesterday, telling him I really had no desire to dance for strangers in a restaurant, but that I really did want to be good enough to dance for friends. Right now, it feels just right: dancing for Ned and Nat, and for my Baby Bellies. (Last night I felt so bloated, though, that I just danced upstairs in my room so no one could see, and then I felt much better.)

In another dream, a neighbor who doesn’t like me — local politics, you shouldn’t know from it — came to my door to wish me a happy holiday, and I was so happy to see her. She was all in gray. That’s all there was.

Tonight I have some beautiful filet mignon I am going to try not to ruin so that the boys can taste really really good steak. I also bought potato knishes and challah, just because they like that stuff so much. I’m going to try tiny nibbles, as opposed to the Atkins thing, because more and more I feel like the Atkins thing is so crazy and unhealthy. (I shouldn’t eat a clementine? Or a carrot? How stupid is that?) Plus, obviously I’m not getting any thinner. But maybe that’s because of all the chocolate gifts that have found their way into my house. I can resist pasta, bread, rice, potatoes, but I cannot resist chocolate.

Tomorrow is Christmas Eve and of course we have nothing planned. For all of you who do, I hope it is a wonderful, beautiful, healthy holiday. For those of you like me, I wish you fun and happiness, too! Maybe Chinese food and a movie!

Saturday, December 22, 2007

Action

There are several excellent efforts afoot to put the brakes on places like the Judge Rotenberg Center in Canton that use aversive techniques. I am contemplating a petition of my own, that would specifically address the JRC and go to my Governor and Board of Education, and to the public hearing on January 16 (see below). More to come on this in upcoming days.

Several different Massachusetts state senators and representatives have filed bills like the following. Hearings are January 16 at the State House, I believe. I borrowed the information below from the ARC of Massachusetts website, an excellent resource for this issue and much more.


This bill, filed in various iterations for the last 20 years, would ban painful aversive therapy in Massachusetts. Filed by Rep. Barbara L’Italien. Referred to Joint Committee on Children, Families and Persons with Disabilities. Public hearing scheduled for January 16, 2008, in room A2 and will begin at 10:30 a.m.

Furthermore, a reader pointed me to a letter that has been circulating since November (thanks, Christine!) Many, including parents, self-advocates, and professionals, have signed. I just asked that my name be added. This letter, begun by Derrick Jeffries (derrick_jeffries@bestmail.us) is intended to go before the APA, American Psychological Association, in order to pave the way for ending the use of aversives as an educational tool everywhere. If you email Derrick with the subject line “sign onto the APA letter,” your name will be added to the list.

PLEASE CONSIDER SIGNING ONTO THE LETTER BELOW!!

A Call for Ethical and Unprejudiced Leadership and Practice in the Field
of Psychology

An Autism & Mental Health Community Letter

October 10, 2007

This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 “Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment” (hereafter referred to as 2006 Resolution), and the 2007 “Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment” and Its Application to Individuals Defined in the United States Code as “Enemy Combatants”” (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged “Enemy Combatants,” or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.

Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.

The use of the phrase “effective treatment,” does not make such techniques humane or acceptable. Furthermore, attempting to justify them as “treatments” of “last resort” may not be completely accurate. It has been clearly demonstrated that positive behavioral approaches, based on a careful analysis of the functions dangerous or disruptive behaviors may be serving are as effective and more enduring than behavior change techniques based on pain and fear. JRC uses a device that they call the Graduated Electronic Decelerator (GED), to deliver painful electric shocks. Reporters, legislators and others who have experienced the 2-second shock from this device describe it as incredibly painful. A report from the New York State Educational Department noted that JRC was not only using electric shock for dangerous and self-injurious behaviors but also for behaviors that are benign or idiosyncratic such as “nagging, swearing and failure to maintain a neat appearance,” or “slouching in a chair.” The director of the Judge Rotenberg Center testified at a legislative hearing that one student received 5,300 electric shocks in one day. In his testimony, he stated that over a 24-hour period, this student, a teenager who weighed only 52 pounds, was subjected to an average of one shock every 16 seconds. During some periods, the student was automatically shocked every second if he lifted his hand off a paddle. A copy of the New York State Report can be found HERE: http://boston.com/news/daily/15/school_report.pdf and a myriad of additional information on the school and its practices can be found by googling the Judge Rotenberg Center.

Proponents of behaviorism have voiced their opposition to these practices. Although the Director of the Judge Rotenberg Center often defends his practices by stating that he was trained by B. F. Skinner, Dr. Skinner made it very clear that he did not condone such practices. At the age of 83, he was interviewed by Daniel Goleman of the New York Times. In an article published August 25th, 1987, titled, “Embattled Giant Of Psychology Speaks His Mind,” B. F. Skinner’s view is stated as–“The use of punishment is another issue Dr. Skinner still feels impassioned about. He is an ardent opponent of the use of punishment, such as spanking, or using ”aversives” -such as pinches and shocks – with autistic children. ”What’s wrong with punishments is that they work immediately, but give no long-term results,” Dr. Skinner said. ”The responses to punishment are either the urge to escape, to counterattack or a stubborn apathy. These are the bad effects you get in prisons or schools, or wherever punishments are used.” The complete article can be viewed HERE: http://query.nytimes.com/gst/fullpage.html?res=9B0DE3D6143CF936A1575BC0A961948260&sec;=health&spon;=&pagewanted;=print

The 1965 experimental research of O. Ivar Lovaas, Benson Schaeffer, and James Q. Simmons, conducted at the University of California, Los Angeles, concluded that electric shock applications did not have enduring effectiveness. In conclusion, they questioned the need for shocking children with Autism by stating, “A basic question, then, is whether it is necessary to employ shock in accomplishing such an end or whether less drastic methods might suffice.” (Journal Of Experimental Research in Personality 1, 99-109 (1965))

A recent Mother Jones article about this institution began like this, “Rob Santana awoke terrified. He’d had that dream again, the one where silver wires ran under his shirt and into his pants, connecting to electrodes attached to his limbs and torso. Adults armed with surveillance cameras and remote-control activators watched his every move. One press of a button, and there was no telling where the shock would hit—his arm or leg or, worse, his stomach. All Rob knew was that the pain would be intense.”(Mother Jones, August 20, 2007).

A horror from the Abu Ghraib prison scandal? No, torture carried out in the name of treatment, right here in the State of Massachusetts, against the most vulnerable of our young people — and designed and implemented by Psychologists.

It is additionally noted that programs that are built around scientific knowledge and principles will generally welcome peer review and a continual improvement process. Currently and historically, JRC practices are remarkably deficient in these areas. As leaders in the field of psychology, and as professionals who are intolerant of torture, APA has an opportunity, if not an obligation, to demonstrate leadership in this matter. Please consider the following facts and arguments.

Section 1 of the American Psychological Association Code of Ethics, creates a standard of excellence in regards to the personal accountability of psychologists to their Code of Ethics. It also establishes a means for resolving professional ethical issues between psychologists and with organizations with which Psychologists may be affiliated.

Sub-Section 1.05 of the Code of Ethics covers the topic of Reporting Ethical Violations. This sub-section related to reporting, places a grave responsibility upon APA members to report apparent ethical violations that have “substantially harmed or are likely to substantially harm a person or organization.” This reporting “may include referral to state or national committees on professional ethics, to state licensing boards, or to the appropriate institutional authorities.”

Within the 2007 Reaffirmation, reference is made to the 2006 Resolution, stating emphatically that it is “a comprehensive and foundational position applicable to all individuals, in all settings and in all contexts without exception.” We are in agreement with this position.

We are pleading with APA psychologists, and all psychologists who independently and voluntarily follow the APA Code of Ethics, to consider that the 2006 Resolution is inclusive of all human beings. We ask that it be applied toward those who are receiving treatment/services related to symptoms associated with autism, developmental differences, and mental health challenges, including such that may cause or contribute to self-injurious behavior. This letter is an earnest appeal to APA leadership and all professionals in the field of psychology to demonstrate ethical practices and adhere to the principles of the 2006 Resolution and the 2007 Reaffirmation in opposing the use of skin-shock and food deprivation that are currently being administered as “treatment” for self-injurious behavior, aggressive behavior, and other behaviors that are being considered as precursors. Skin-shock or food deprivation under any other context, or being administered to any other population segment would be considered an inhumane form of punishment that in reality is truly torture. According to the 2006 Resolution, there can be no exception for this type of degrading treatment.

Although there are some children and young adults who are able to communicate how they have been “substantially harmed by a person or organization,” there are many others who are unable to do so. Even those young people with the ability to communicate how they are being harmed are virtually unheard. Regardless of the individual’s ability to communicate and describe torture and its physical, mental and emotional effect upon them, this type of “treatment,” is still inherently wrong. Is it not the r
esponsibility of a professional or any human being to take action when they are personally aware of acts that are inhumane and degrading forms of torture?

At the JRC this “treatment” is being authorized under court order. While Judges may have extensive expertise within the framework of law, they are reliant upon the testimony of experts (in these cases, Psychologists) to assist them in making decisions. Experts within the field of psychology need to see an example of leadership from organizations such as APA. Good leadership provides guidance and constraints in all areas that are conducive to professionalism and best practices.

In conclusion, we are respectfully appealing to APA members and leadership on the basis of professionalism and unprejudiced application of your own code of ethics, and consistent with your 2006 Resolution and 2007 Reaffirmation, to formally and specifically declare your position regarding the use of skin-shock “treatments,” food deprivation, and any other aversives that inflict pain or deprive basic human rights at JRC or elsewhere. We are calling upon APA members to apply the Code which condemns the treatment that is currently taking place at JRC.

We respectfully request that the APA send this letter to its members, post it on their website and/or publish it in a newsletter or other publication that reaches its full membership. We request that the APA as a professional organization, and as professional individuals actively and vociferously advocate for best practices while opposing that which is torture. We furthermore request that the APA, as an organization, make a formal and specific declaration of its stance in this matter and exercise appropriate discipline, thereby demonstrating that the Code of Ethics will be applied without prejudice. Your example in this will be a voice of hope for those who have been locked away, subjected to daily torture and unseen and unheard for too long.

Written and Presented by: Derrick Jeffries (Person with Asperger’s Syndrome) and Nancy Weiss (Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for Disabilities Studies, University of Delaware)

The following individuals and organizations endorse this message:

1. Bernard Cooney, Ph.D.,Assistant Professor Sp. Ed.
Le Moyne College, Education Department, Syracuse, NY

2. Stephen Drake,Research Analyst
http://notdeadyetnewscommentary.blogspot.com/

3. Not Dead Yet, Advocacy Organization
Forest Park, IL

4. Suzanne M. Swindell, M.S.Ed.
Resource Teacher, Office of Sp. Ed.
Baltimore County Public Schools

5. Lori Noto, University of Bridgeport, Bridgeport, CT

6. Strengthening Our System, Inc., Human Services Agency
Floyd, VA

7. Rita B. Thuot, Director
Gaston Residential Services, Non-Profit Service Provider

8. Mary C. Cerreto, Ph.D.

9. APA Member, Associate Professor of Family Medicine
Boston University Medical Center

10. Douglas Biklen,Dean and Professor
School of Education, Syracuse University

11. Debbie Gilmer, M.Ed.,Associate Director
Maine Support Network,Western Maine Partnership, UMF

12. Kim McConaughy M.S., Behavior Analyst
State of Minnesota, Community Support Services

13. Debra Rezendes,Virginia Tech Autism Clinic

14. Amy Wrenn

15. Greg Scott

16. Kate Dempsey

17. Tonda S. Stillwell
Gastonia, NC

18. Diane Coleman, President
Not Dead Yet

19. Linda M. Bambara, Ed.D.
Professor of Special Education
Department of Education and Human Services, Lehigh University, Bethlehem, PA

20. Timothy P. Knoster Ed.D.

21. Colleen Horton, Parent
Austin, TX

22. Sheila Collector, Behavior Specialist
Dept of Special Education, Howard County Public Schools

23. Sondra Williams, Person with Autism, Parent
Ohio

24. Susan Fitzmaurice, Parent, Disability Advocate
http://disabledsoapbox.blogspot.com/2007/10/call-for-ethical-and-unprejudiced.html
IDEAAS

25. Teddy Fitzmaurice, Self-Advocate, Person with Down Syndrome
Teddy’s Ts

26. Lou Brown, Professor Emeritus
University of Wisconsin

27. Howard Renensland, Concerned Citizen

28. Cheryl Trommater, Advocate

29. Alison Hymes, M.S.
Psychiatric Survivor and Advocate
http://hymes.wordpress.com/2007/10/13/petition-the-american-psychological-association-to-ban-torture-against-people-with-disabilities/
Degree in Counseling Psychology

30. Adapt Montana
Disability Rights Group

31. Not Dead Yet, Montana
Advocacy Organization

32. Marsha Katz, Person with a Disability, Family Member, Concerned Citizen
State Organizer for Adapt Montana and Not Dead Yet, Montana

33. Kitsune J Scott, Concerned Citizen
Portland, OR

34. Mike Stanton, Parent, Member of the National Autistic Society
http://mikestanton.wordpress.com/
U.K.

35. Mary Johnson, Disability Rights Advocate, Author of Disability Rights Books
Advocado Press

36. Kevin Leitch
http://www.leftbrainrightbrain.co.uk – Autism News and Opinion
U.K.

37. Jamison Dupree, Person with Muscular Dystrophy, Concerned Citizen
Mobile, Alabama

38. Janet Conklin, Autism Specialist, Lane ESD
Eugene, OR

39. Roy Probeyahn
South Manor, N.Y.

40. Ragged Edge Online
Disability Rights Website

41. Advocado Press
Disability Rights Publications

42. Hugh Sheridan, Parent of Autistic Child
Needham, MA

43. Joan Sheridan, Parent of Autistic Child
Needham, MA

44. D’Arcy Sheridan, Autistic Person
Needham, MA

45. Sandra Weiss Knepp, MA,Executive Director
Bloomin’ Youth, Growing Independence in Youth with Autism

46. Samuel J. Ashley

47. Ellen Ewing, Service Coordinator/Family Consultant / Parent of a Child with Developmental Disabilities
WIDE HORIZONS – A Family Support Program
Yamhill County, OR Developmental Disabilities

48. Richard J Pratt, Executive Director
Transitional Living Services of Onon
daga County, Inc., NY

49. Anne Carpenter, Person with Autism

50. Beth Mathis, Concerned Citizen

51. Dan Kennedy, CEO
Human Life of Washington

52. Dr. Sally Rogow

53. Human Life of Washington
Bellevue, WA

54. Center for Life Principles
A Project of Human Life Ed. Foundation

55. Mary E. Donovan
No. Easton, MA

56. Ironsides

57. Donna Libby, Lane Regional Autism Specialist
Oregon

58. The ARC of the United States
Authorized by Sue Swenson (CEO)

59. The Autism National Committee (Autcom)
Dedicated to “Social Justice for All Citizens with Autism”
Authorized by Sharisa Kochmeister (President)

60. Sharisa Kochmeister, BA Sociology/ Psychology
Grad. Denver Univ., 2004, former user of facilitated communication, current user of augmentative communication; former victim, current victor
The Autism National Committee (President)

61. Phil Schwarz
Director, Autism National Committee, Director, Massachusetts Chapter, Autism Society of America, Vice President, Asperger’s Association of New England

62. Gerald (Jerry) Newport
Author/Advocate with Asperger Syndrome
http://www.realmozart-whale.com/ Co-Author, Mozart and the Whale, and other books

63. Margo A. Williams
Director, Autism National Committee, Treasurer, Autism Society of Washtenaw, Mother, to wonderful child with autism

64. Denise Fletcher
Psychiatric Survivor

65. Sandra McClennen, Ph.D.
Licensed Psychologist in Michigan and CPQ by ASPPB, Vice-President, Autism National Committee

66. Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project

67. Rikkii Clarent, School Psychologist

68. Karen J. Zimbrich, M.Ed., Life Member of TASH
Resident of Massachusetts,

69. Nancy Donahoe, Person with Autism

70. Mira Davis-Kelly
The Autism Acceptance Project

71. The Autism Acceptance Project
Advocacy Organization, Promoting Acceptance and Accommodations for People with Autism.
Approved by Estee Klar-Wolford & Mira Davis-Kelly

72. Kristina Chew, Ph.D.,Assistant Professor of Classics, Co-director, Honors Program, Advisor, Special Scholarships and Graduate Studies, Department of Modern and Classical Languages Saint Peter’s College, Jersey City, N.J.

73. Navidad Arnett, Parent of a Person with Autism

74. Melissa Gordon
Parent of a Child with Asperger’s AND Concerned Citizen

75. Connie Lapin, Advocate, Community Activist and Parent of an amazing son (39) with the severe challenge of autism

76. Harvey A. Lapin, D.D.S., Dentist, advocate, parent

77. Laura Mercier

78. Vera Lingonis, Concerned Citizen (N.Z.)
Wellington, New Zealand

79. Susan Yuan, Ph.D., Associate Director Center on Disability and Community Inclusion, University of Vermont, Parent of a 33 year old man with Angelman Syndrome, Center on Disability and Community Inclusion
University of Vermont

80. Autism Spectrum Differences Institute of New England

More – or Less-on Plans

I have started planning for my next Baby Bellies class. I invited all of the girls with disabilities that I knew from Ben’s school and beyond (by discussing it with their teachers or their moms), as well as determining whether the four girls from last time were coming back (they are, plus a sister or two).

In order to get ready, I just ordered six child-size hip scarves and six child-size veils from the Moondance website. I am just so excited, because this means that I am going to have just what I need to teach my classes in January and then in the spring, and so on. I will have my own child-size stuff to distribute to them, in all colors, and then I don’t have to use my stuff and watch it get torn, dirty, etc. Besides, my hip scarves were always loose on them, no matter how much we tied them. And my veils were too wide, so the girls would often trip; not a good thing for an aspiring bellydancer. Now I can hand out little costumes in their favorite colors.

I probably need to bring in those cheap, long mirrors, too, and prop them up here and there so the girls can study their form.

I also have to put together a new collection of music, so that I can have just the right songs at the right time in class. I need a series of slow songs for stretching, then several taksim-like (no rhythm) for standing in one place isolations. And then, some quicker songs for learning traveling steps. And finally, some sinuous melodies for veilwork, which is their favorite. I could save my favorite up-beat numbers for last, for the purpose of creating dance routines, which they also love to do.

I also learned the benefit of break and snack time. And down time. So sometimes I start by having them sit around and watch one Bellydance Superstar number on DVD on my laptop. And halfway through the class we sit down and I give them goldfish or something, and they get drinks of water (wearing their hipscarves around the school, jingling all the way, making everyone smile). This helps them focus for the remainder, the dance routine part of the class.

It is interesting to me to see that in every class, what people want is to learn a dance routine. They want to be able to do the whole thing, not just learn the parts, because it was a dance that got them there in the first place. I was the same way. But now I’m learning that being given components and then layering them is the most useful thing because you don’t need to memorize someone else’s choreography start-to-finish; you need phrases that you can put together in your own way.

It all takes so much time and practice, and that is something the beginner does not want to hear. So I think it is my job as the teacher to make that beginning part as enjoyable as possible, and give them some of what they most desire (routines and cossies) as a motivation for learning the building blocks.

What all this really means to me is a commitment to teaching children dance, which just makes me so happy.

Friday, December 21, 2007

Evil Tickle Cough

What is with that cough of mine? Why does it happen like that, where I suddenly get that gripping tickle in my throat and then I’ve got to cough like crazy. Ned, Nat and I were at a party tonight where it happened; how embarrassing! I had to run into the bathroom to just cough and cough in peace. My eyes were tearing and my nose was red; I felt like I was a choking clown. “Help!” I said to Ned, “I’m anaphylacting like crazy!” Is that what it is? Allergies? Finally Ned got my bag and I used the inhaler and took Claritin, which I now travel with! I have to, because of this fershluggener tickle cough.

Then, all was well. Cats may have been involved…my host has several which were unseen.

Maybe it’s because we were out of coffee this morning and I prayed, “Oh, I need some coffee!” and maybe what was heard was, “Oh, I need to cough — ee!”

Good night.

Fakrenha Out Loud

During the times that I am not busy screaming about terrible schools, delightful sons, too much snow, writing/editing my novel, I am dancing — just about every night.

Fakrenha is a Natacha Atlas song that has taken hold of my mind, and I don’t even know what it means (yet). I have a few calls in to different Arabic-speaking friends. The song starts slow, almost seems to lack a rhythm; but then, after a few phrases, the drums come in, and the Egyptian strings, and then — wow! A fantastic Arabic-European song.

I danced to it in this, my new black cossie .

and in this, my red Eman Zaki:

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