Susan's Blog

Saturday, January 12, 2008


The language of a family is unique and fascinating. By living together and by sharing a collection of genes and experiences, you learn to speak each other’s language. Most humans — and indeed, many animals in general — have the capacity to read each other. Some are more adept than others.

I had always loved reading and figuring people out. I was a communication major at the Annenberg School at Penn, and there we mostly studied how people interact, all the various modes and media. But even before that, I prided myself on my ability to decipher others’ minds. My parents were probably my first “projects.” They have always fascinated me, because they are like me, and then again, they are completely themselves. Sure, you could say that my deep interest in understanding my parents sprung from a kind of Freudian survival instinct; who doesn’t need to be in sync with their parents during childhood?

My connection with Mom and Dad continued into adulthood because they have continued to be full-fledged people in their own right. They have their own lives that they are still leading, and a marriage that has so far lasted 50 years (on the 25th). And they have their own language, complete with history, baggage, and jokes that they have shared with me, somewhat. I feel that I know so well how they think that I can imitate them and predict certain of their reactions.

Dad and I have always played a game called “opposites,” ever since I came home in first grade describing this bit of curriculum I had learned. It started out with Dad giving me fun little quizzes like, “What is the opposite of up?” That kind of thing. But, like other family interactions, this opposite game took on a life of its own. One time, on his way back from work, Dad reported that he almost went off the road laughing because he had finally nailed an opposite to “Yassir Arafat:” No Ma’am, I’m Skinny. It goes like this: Yas = No; Sir = Ma’am;
Ara [You’re] = I’m; Fat = Skinny. You may think you understand this now, and maybe you get the basics, but there is also so much family history here. Like the fact that many of Dad’s opposites are about historic figures, particulary World War I and forward. Dad is a historian. But also, he is fascinated/obsessed with certain questions in history like “How could the world have let the Holocaust happen?” It is personally and also intellectually interesting to him.

Mom, who is kind of a walking encyclopedia, almost always can provide Dad with the accuracy checks. They are perfectly paired, in some ways.

I am not doing this subject justice. Thinking about Dad and Mom and their way of thinking just makes me laugh and laugh, a love-filled laugh. I think you know what I mean. Maybe you know your own dad this way or your mom, or your sibling. Here, I will try to give you an example of the most recent set of opposites that came my way. They exemplify Mom and Dad’s obsession with breads, eating, not eating too much, history, etc.

See if you can get any of these Bakery Goods.

1- an ordinary German citizen of the pre World War 1 era/to remain stable at sea
2- girl/guy
3- treat people harshly/five dollar bill
4- ally/throw/she/i’m not surprised
5- mom/under
6- buck/very sane person (slang)
7- very speedy runner
8- worker/ounce–speaks softly–ear

Thursday, January 10, 2008

Text on The City

Last night I had my Prozac dream, which I have not had in such a long time. It is odd because I am now reducing my dosage, so you would think that I would not have that dream. My Prozac dream is of a place I call “The City,” for want of a better description. Years ago, when I was in the throes of therapy, grieving, OCD, growing up (even though I was in my early thirties), and all sorts of other mean-and-nasty things, I dreamed about The City all the time, and its various neighborhoods.

The City is probably not a real place, but — to utterly remove all the magic from it for a moment — a collage of places I’ve been to and then some. Its urban part is like Philadelphia (especially the South Street neighborhood, and also the subway system); its excellent shopping district is like Harvard Square the way it used to be ante-Starbuckum, pre-chain boutique; and like Paris. There is store after store of antique, Fin-de-Siecle gowns, jewels, etc., which actually fit me. There is also a mall that is kind of low-rent but has its fun stores, too; some kind of department store with tons of great sweaters.

There is also a very bad neighborhood in The City. It is very close to the subway area, and sometimes it is the subway itself: extremely complicated with gears and machinery that can actually kill you if you don’t understand how the mechanism works. The worst part of The City is this area that is very much like West Philly, where I used to live when I went to Penn. Only West Philly was not this way, in reality. It only looked this way. I never had anything bad happen to me in the five years I lived there; just a lot of run-ins with very interesting people who somehow were always interested in me (like the man who sat down with my friends and me in a booth at the McDonald’s on 40th and Walnut (?) or Chestnut (?) and tried to be a part of our conversation and the three other young men I was with froze in fear (one was Ned). Eventually the guy leaned in and said, “Tell ‘er I said ‘hi'” and left. Another time, a different man sat down with us at our booth there and was much more animated. When I said, “Ned, I want those fries!” the guy yells out, “Don’t be so selfish!” At which point the four of us made a mad dash out of there. Another time there was the guy at the movie Witness, who interrupted every scene every few minutes and we were scared of him, too, and it turned out he was a midget. And when we got outside of the theatre, several blocks away, Philadelphia was on fire, but never mind…)

The bad part of The City is not populated with interesting homeless men; it is full of gangs and killers. So whenever I get lost in that part of The City it is sure to be a bad dream.

The best part of The City is the part that leads to the seashore. You have to go through these beautiful wooded trails to get there, and you are almost there when you get to this amazing resort. This place is psycho-gorgeous, over-the-top fun. This resort puts The Atlantis to shame. There are indoor pools with slides that turn you upside down! Pools with ball pits, somehow! Outdoor pools with multi-level waterfalls you can slide down!

After the resort you eventually go down winding beach roads that lead to an area where there are cliffs. This is the most beautiful ocean vista you have ever seen. I mean, up there above and beyond the beauty of Ocean Drive leading to Coast Guard Beach on Cape Cod. But like that. But the cliffs. Well, the cliffs. The thing is, every now and then the ocean in The City rises up over those cliffs, huge waves, impossible to predict. Then the dream is scary again.

Last night I was only at the resort, and having the time of my life. I was going to head out to the ocean anyway, despite the danger, but I woke up before I got there.

Sometimes what I think is that The City is kind of like an uber-world, a bit like C.S. Lewis’ real Narnia, which you learn about in The Last Battle, the last Narnia book, a world that was somehow more real than the world we are all in, but you could only get there in certain ways somewhat beyond your control. I don’t know what makes me visit The City, I only know that I wish and wish that I could really be there, even with all of its fearful parts.

I don’t want to talk about what I think The City really is because I don’t want to ruin it for anyone, especially me. I’m just happy to have been there last night, and that I had the good sense not to go all the way to the cliff.

Wednesday, January 9, 2008

My Life Melange

I am having an incredibly good day. First of all, it was really warm! The snow has been reduced to ashen gray piles here and there with brown crackly leaves sticking out of them. Mud is everywhere. The sky has strange light; even Max commented on it!

And, aside from getting that workshop flyer finalized, I also had a class tonight with Melina, a teacher I’ve had before (a year ago), and I had forgotten how great she is! She is so bubbly and positive and lovely. Her style is Greco-Turkish, which is a little different from the Egyptian/Arabic style I love, which I’ve been learning (and will continue to learn with my pal Najmat). Greco-Turkish is a bit more wild and less straight up-and-down than the Egyptian. It seems a bit more suited to my body and my personality. You wear flowing skirts and fringed belts rather than the straight stretchy skirts. You can imagine dancing around a fire with a sword on your head with this style.

(And, by the way, I bought a real, curved sword while in San Juan, from a fantastic bellydance shop. I practiced with it in the store and the shopkeeper was quite impressed! It should arrive any day and that will be a whole new dimension in my practicing.)

She also makes class interesting by throwing in tidbits of Greek culture, Goddess references, and all with the same happy demeanor. She never criticizes or singles anyone out; she keeps everyone laughing but working very, very hard. We had bent knees and ultra-straight backs for long minutes at a time, practicing slow, controlled knee shimmies and also alternating hip lifts. The class was packed, and no wonder. We ended with a traveling step back and forth, and this looked really good en masse. We moved to the song, “Simarik,” by Tarkan. It is a great dance song, that starts with a kiss and periodically has the kiss sounds punctuating the ends of the phrases.

On another front, I have been very busing writing. I am nearly done editing Dirt: A Story of Gardening, Mothering, and a Midlife Crisis, (my novel) and so I will be sending it back to my agent for her to give it a final read before shopping it around! I absolutely love how it came out. I love the characters so much I don’t want the book to be done because I’ll miss them! It is just the kind of book I like to read, and I now think it is one of the strongest, loveliest things I’ve ever written.

And just now, quite incongruously, I had a gut-busting, pants-peeing laugh with Ned about this blog post he came across. (I hope no one is offended; I just think typos, etc. are so funny.) Ned and I first got together over having a similar sense of humor, and that, my friends, is the best adhesive a marriage can have!

Yoga/Bellydance Workshop

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
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,, is a registered and certified Yoga teacher, and a mother to a teenage girl with autism.
Susan Senator,, 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

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)

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