Susan Senator

I just wrote this to the Boston Globe, my state senator, and my state reps, regarding the proposed senate budget for Massachusetts. The two items I mention are only a few of the vital services being cut, but they jumped out at me, because in just three short years, Nat will require these. If you live in Massachusetts, write to your state senators NOW.

Oh, and by the way, I have noticed many many new trees being planted along Route 9, which is a state highway — newly paved, too, by the way. So Massachusetts money for trees and asphalt but not for vulnerable people? Call me the new Lorax: I speak for the disabled.

Dear Cindy,
I know you must realize that the Senate’s budget is nothing less than a horrorshow. They are gutting Transition Services and Day Services for adults with developmental disabilities. There will be nothing for these people to do with themselves all day. What will people like my autistic son Nat, now 19, do with a situation like this? He has come so far, due to his education, but he still will require support, and yet now the Senate is basically saying, “Oh, well, have a nice life.” There is no justification for these actions. None. This is nothing less than evil. I am asking you as a woman with a great record in human services and a great heart to stand up and read this email and tell them that they are wrong to make these cuts.
–Susan Senator

Here are some of the cuts proposed (taken from the ARCMass website):
· 6,500 adults will not get Day Habilitation services will have no place to go during the day because of the elimination of that program ($115 million cut).
· 730 individuals getting Extended Employment services through MRC will lose those services and likely lose their jobs or have no place to go during the day ($4.9 million cut).
· 10,000 families will lose crucial Family Support and DESE-DMR Services, a wide-ranging and cost-effective program that funds everything from respite to afterschool programs to specialized medical equipment, and helps keep families together ($32 million cut).
· 650 people will lose transportation services, which allows people with disabilities to get to their jobs, doctors appointments, grocery stores, etc.
· 608 students with disabilities transitioning from school to adult life will not get the services they need to make the transition successfully.
· Families with children with Autism Spectrum Disorder will see reductions in Autism Division, DESE-DMR and Family Support line-items

WHY FUNDING IS NEEDED: If these cuts go through, it will have a domino effect, impacting the 33,000 individuals with disabilities served through the Department of Developmental Services, not to mention those served through other agencies. Since 2006, DDS’ budget has grown just 1.8% per year in state-only dollars.

I declare, whenever I wear a new bonnet, all numbers go flying out of my head.
–Scarlett

There is something about spring dresses. They just lift your spirit, as the skirt lifts with the pleasant breezes. I got a new sundress last week, more like a party dress I wore when I was 7. It’s creamy white, with kind of goldish appliques. The waist is normal, not Empire, and the skirt is full and ruffly. All it lacks is a big golden sash. I wore it today because. Ned took me out for a picnic, just an hour-long, and I felt as happy as Scarlett with her new bonnet. I think it was a little bit magical for me today, too.

I wore the dress to the Baby Bellies class, and they all wanted to know why. I told them that I went on a picnic with my sweetheart. They got very giggly. Then it was onto show and tell, a new feature of Baby Bellydance class. Each girl shouts out something new they want me to know about: Elize’s new big scratch; Hannah’s first plane ride; Eva’s aunt moving to town. They eat their snacks — today it was little glazed Popems — and then we get started. Lately all I’ve been playing is “Habibi Ya Eini,” by Nourhanne, which is what we are using for the recital.

This recital is going to be a little different from the previous ones. This time they are all doing duets, and the best part is, they have done all the choreography themselves! I watch and coach. Sophie and Julia made up a movement where both of their heads are covered under two veils, so they look like a large fuschia bumpy thing. They each grab a veil off their heads and then spin with them. Then they walk away and towards each other. It is lovely.

Hannah and Elize first do a separate, then a duet act. Hannah is completely en pointe, truly amazing to watch, a wispy spinning spritely thing. Elize does her camel walk and does some turns, and then they fall into each other’s arms.

I have them all practice their routines for the half-hour class. Each week I show them a new move that may help inspire them for their act. Today I could not dance a whole lot because of my “flairy dress” (this is what my sister and I called them growing up. We also have a tape recording of us when we were toddlers, and one of the biggest sentences I utter is, “I wear a DESS!” Dressing up, apparently, was always inspirational and magical for me) . I showed them the strut with the veil that I learned last night in my class with Hannan. In this move, you walk like a queen, leg extended and toe touching gently but also sassily in front of you, swaying your hips just a little, and arms held high with the veil floating behind you. The trick is to walk with enough fullness and sass to make the veil fly as high and full as possible.

They loved the veil strut and Eva and Kaisa mastered it quickly. This pleased me enormously because Eva is new at it and often gets discouraged. And bubbly Kaisa is a little distracted; she is usually just being a bride or a fairy with the veils; not much actual bellydancing. She gets deep into her fantasies with the veils. I can totally relate. Anyway, today something clicked for them. Eva and Kaisa discovered each other, and they discovered their bellydance metier: veil work. Each one had no partner, so they paired up and with a little encouragement from me (“Try using the veil walk, and then do some veil spins”) they worked out a duet!! They used a green and a blue veil, which they felt looked like the ocean, and after a few permutations, (Butterflies; Butterflies of the Ocean; Ocean Butterflies) they settled on the troupe name “Ocean Fairies.”

Kaisa’s mom asked me about next year, because “this is her absolute favorite thing, so I’m going to schedule all her other activities around your class.” It is funny to hear the moms’ points of view because it is not always evident that the girls are actually getting something out of bellydance and my teaching. But today, with my three pairs of dance troupes, I felt this must be true. Something about floating veils and flairy dresses and spring sunshine, I guess.

When you’re feeling bad nobody really wants to know. I think that “How are you?” is kind of meaningless, it’s just stuff we say. I think Nat knows that, on some some level. Maybe to him it seems like there’s so much stuff you’re just supposed to say, and none of it gets to anything real.

So what is real for him? If it’s just what’s in front of his nose, then how does he deal with complex feelings? Does he feel them and not understand them?

Maybe that’s the way you’re supposed to be. That’s what I was told, long ago: “Just feel your feelings.” Right now that’s what I’m doing and it feels putrid. I’ve been carrying Nat-guilt around ever since I dropped him off yesterday. Guilt and grief.

I hate the way his brothers have to be told to say goodbye. I hate the way he has to be told to say Happy Mother’s Day. For all of them, it’s just a lot of words.

Meanwhile I’m sick of words and I’m sick of feelings. And I want someone else to be in charge for a change.

Years ago, when Nat was around 10 or 11, we were seriously considering putting him into a residential school placement. This was after a year of escalating aggression on his part, and complete bafflement on ours. We suspected that he was in the wrong school setting, a classroom that was a blending of kids with mild intellectual disabilities, in a “regular” (whatever that means) public school building. We were meant to feel so proud, that Nat could “make it” in this program. The Director said to me at the time, “Just think what doors will open for him if he can get his behaviors under control.”

That should have clued me in right there. I remember having that little frightened frisson, for just the briefest moment, and then right away covering it up with my eagerness to see Nat rise above his disability and possibly enter the ranks of those who can pass for normal.

Those were my goals for Nat back then. He seemed to be on a trajectory towards more inclusion, fewer supports. LRE, baby. But the wrong combinations of things — too much Zoloft, too little behavioral management/positive reinforcement, too many clueless professionals in the classroom, growth spurt, hormones — conspired against Nat, against us. Maybe Nat did not feel liked and appreciated in that classroom. Maybe he felt things I could not figure out. We just didn’t know, and we panicked when that school program expelled him, and we learned that there were “no programs open to him” at the moment. And so Nat had no school for about 6 weeks. It is a sad and scary story that I have retold numerous times, and I still have no real handle on it.

I talked to a parent or two whose child had “gone residential.” (That term sounds like “gone postal,” or “gone off his rocker.” But that is what I used to say, not realizing the way this phrase was making me feel, subconsciously.) One mom had a thirteen-year-old girl who had “come after her with a knife.” That was not Nat, I told myself. Deep down, I felt sorry for this woman. I felt reassured that this was not our situation. Nat was going through a rough spot. Nat would “get better.” I also remembered people saying to us, “we’re talking throwing furniture out a window, that kind of thing. Not hair-pulling or pinching,” in order to give us perspective on where Nat was on the aggression spectrum (the latter, not the former).

It is as if all of my life with Nat has been about playing the game “How Bad Is Your Kid’s Autism?” And going through a series of steps forward, and steps backward, like a kind of depressing version of Chutes and Ladders. “He only has Asperger’s. Advance three steps.” But then, “Diagnosis changes downward, to PDD-NOS. Move back a step.” And then, “School system grants 30 hours a week of ABA. Move ahead a step (or back, depending on how you view ABA).” Or, “School system insists he goes into a multi-handicapped (staff not specifically trained in autism) classroom; back two.” But then, “He can play on a regular soccer team,” advance five. Or how about taking a card from the Meds pile? “Clonidine gets him to sleep, advance five steps.” Or, (uh-oh) “Stratera made him go nuts, go straight to Meds Hell and lose a turn.” And don’t forget the entire swamp of alternative treatments where you will go ahead and then back and then ahead and then back while the other person is cured! Is that the end of the game? Is he cured, or did he just have a different kind?

That is not even the end of the game, because some children skip some of those areas of the game board and land in Residential Placement. What does the card say from that pile? In our case, we avoided the issue for years because we “hung on,” as I said in The Book. With the right medication and a different school placement and Special Olympics and the correct alignment of the moon and and and and… Nat came through it.

When our kids do well, we feel somewhat responsible. We credit one thing or another. We feel we have reached the shining end of the game, where at least our kid is fine, not like those other kids.

And when our kids are struggling, and we can’t get any sort of clue about it, we need more help. We might turn to a new treatment. We might turn to a medicaiton. We might make changes in our home environment. We have meetings, meetings, meetings, appointments, EEGs, overnights at the hospital. We get no sleep and we worry, and wonder, how will this end?

We might turn to the Residences at a school we have explored. This feels like we have lost the game. It certainly felt that way to me, all those years ago. I talked to that mom of the girl with the knife and I thought, “There but for the grace of God go I.”

Well, there was no knife, but eventually, there was a placement that made sense for Nat and our family. We all see how he is thriving, knock wood. We are thriving, too, with and without him here every day.

In the updated version of “How Bad Is Your Kid’s Autism,” Residential placement will be a card you choose that will read, “Choose residential placement. Your kid learns how to eat dinner peacefully with others, he is learning a sport, and he seems more confident. Advance three steps.”

The winner is the first one who goes through most of the board and no longer feels like a failure.

When Max was three, we used to walk to his preschool together. Sometime he would hold my hand, but sometimes he would struggle free if it was the right hand, because he wanted “the brown one.” The brown hand was my left hand, which I did not use as much for cleaning and over-cleaning. The left hand did not have eczema, which I had gotten from poison ivy and then my OCD. Back then I did not know what I was so anxious about, but it had something to do with how different my two sons were. Nat was solitary; Max was what I thought of as “my child for the world.” It seemed that he loved everything. When we were walking to preschool one day, I told him about God, how God is all the good things in people and in the world. He is what makes us happy. To which Max replied, “I like him.”

Now he is wrapping Hannah’s birthday present with such care. He saved up his money (he has a job editing sound files for a company that programs the iPhone; he also babysits for some of Ben’s friends) and bought her a small encaged fresh-water pearl necklace and some special iPod headphones. He (we) baked a chocolate cake of a cute animal (the red panda) that he is going to surprise her with tonight when she comes for dinner.

On Thursday they are baking cupcakes from scratch and decorating them to look like kitten faces, which are to be eaten with around 12 of their friends (here) on Friday night, after he takes her to the zoo and then all the friends go out to see the new Star Trek movie.

I am overwhelmed with pride in him, this son of mine, who has fallen head over heels in love. When we look at them, we can feel how it must be for them, how it once was for us. They don’t think about the future, when it will more likely than not disintegrate from college, distance, other people. They just have each day, bio class together, lunch sometimes, X-block activity (the photography guild that they founded together). They watch Lost, Firefly, How I Met Your Mother, on his bed (door open at all times). The other day Max and Hannah hosted a viewing (for me) of Fight Club. (ICKY but fascinating movie.) Ben wanders in and out playing on Max’s PS3 (also bought mostly with his own money; we try not to spoil them). Nat wanders in and flops down on the giant stuffed puppy we bought Max once for Chanukah (Patrick, from FAO Schwarz). All are welcome in Max’s room, in Max’s world.

The heavy green outside my window
Nat turning it around and having a great weekend, after the painful outburst Saturday morning.
Nat’s success at Papa Gino’s
Nat’s bright blond hair
Max being designated a National Merit Scholar
Max winning a history essay award
Making anime costumes with Max
Max’s ability to have a deep and loving commitment to Hannah
Hannah’s sweetness, and her being almost like a daughter to me
Ben being extremely interested and memorizing and synthesizing and thinking critically about every unit he covers in social studies (from Mesopotamia, to Egypt, to Greece, to India, to the ancient Hebrews…) and making cartoons about it
Z-Brayes
Baby Bellies who want to tell me all about their spring vacations before dance class
Baby Bellies who hug for no apparent reason
Baby Bellies making their own dance routines for our June recital
My new bellydance class for the elderly at the Brookline Senior Center…coming soon
Getting three requests to give talks to autism parents
Reading just about anything by Jay McInerney and that he has my novel manuscript right now
New bellydance teacher starting tomorrow
Local elections, tomorrow, May 5, in Brookline, and post-election parties (getting my political fix sated)
My orthotics

Life is too short to worry about how I appear to others. Or how focused my blog is. The fact is, I put myself out there because I get something out of it. I get interesting and life-infusing feedback. Sometimes I get hurtful stuff. But mostly not. So I write the blog because sometimes I need an outlet and I need the response. I have found from time to time that people get annoyed at me for including other aspects of my life, like the bellydance, like the bellydance photos of myself, as if somehow the pride I take in them is inappropriate.

I don’t really go for that kind of judgment. I am finding, the longer I live, that people’s lives take so many different shapes and forms, that appropriate is a very narrow path. Sure, I would never want to be inappropriate when it comes to my kids or my students, for example, but, otherwise, what, exactly is it about?

The “self-absorbed” accusation I sometimes hear is similar to the “stuck-up” one I heard in high school. It is an outsider looking at my outside and pronouncing me somehow not good enough, even though the form of the insult is an inversion of that.

I really like the admonishment of Voltaire, which is to tend your own garden. I am trying so hard to create garden here, my own Eden, where I can live happily with my loved ones. Sometimes my happiness is as simple as seeing myself in a sparkly outfit, with perfect bellydance form. Sometimes my happiness is a six-month stretch with no outbursts — for Nat, that is. Sometimes my happiness is realizing that Max is succeeding in school in a way that makes my breath catch in my throat. Sometimes my happiness is about predicting exactly when my lowest point of the month is going to be, so on that day I will just pull out all the chocolate I can find. Sometimes it is about Benji asking me about the “vengeful Hebrew God;” or about Ned looking at me that way of his — knowing and sexy — across a tiny candelit table in a beautiful French restaurant that makes me feel like an inexperienced college girl again.

The book I just finished writing is about how we adults — parents of complicated children — need to figure out how to be selfishly happy at times. We don’t just hang up our fun in a back closet once we start changing diapers and holding onto small hands. I think that the trouble with so many adults is that they no longer know how to have fun. But many parents don’t allow themselves so many forms of fun because of that awful word, “Inappropriate.” But people should really think about what truly is inappropriate and what is something okay but they’re scared of doing for fear of looking silly.

I think it’s okay to look silly sometimes. Goofy in love with my husband of nearly 25 years. Dancing alone in my crazy ornate gowns. But to me, it is all a dream come true.

This blog is another dream come true. It is a way to write, but not in a vacuum. I don’t like to write privately. I feel that writing is another kind of relationship, where you put something out there that you have crafted so that it thoroughly expresses what’s on your mind or in your heart, and then it lands on someone else’s consciousness, and stirs their thoughts. A conversation comes out of that, albeit a distant and syncopated one. But a conversation, nonetheless. I like conversations, though not always face-to-face or on the phone. I like knowing what people think (I don’t like getting my feelings hurt, but I do like hearing another person’s thoughts). That is the beauty of this blog. It lets me do just that, and I don’t have to convince an editor somewhere before it gets to happen.

I really think that there are far worse things than being inappropriate or self-absorbed. Like living your life just skimming the surface. Unless that makes you happy, then by all means. If your boat floats that way, I won’t be the one to scuttle it.

I don’t blog as much as I did since Nat’s moved out. Half of that is because I have gotten used to his not being here, and so my mind runs on different tracks. But then the other half is that when my mind collides with thoughts of him, it grows cloudy and unsettled, like the sky before an August thunderstorm. Winds of doubt blow around, causing my pain to rustle and drop to the ground. It all just lies there, unresolvable. I can tell you, I tell everyone, that this was the right thing to do, that he’s doing great, that he transitioned amazingly well, didn’t look back.

I just worry about what I don’t know, what I imagine. If he misses me, what then is his thought process? Does he think, “I want Mommy,” but then, where does it go? How does he explain this to himself? Did the missing-me subside into a gentle but persistent ache?

I just don’t know how well he understands things, and he can be so passive. Most of the time he is passive and gentle. He has “outbursts” when things go impossibly wrong for him, but so do we all. I just know how to modulate mine better, and I know to fake things so that others don’t worry or get alarmed.

I saw an article in People Mag today, about Sky Walker, who faces murder charges. And all his killed mother ever said about him was how he was her life, her heart. Sky had an outburst that just escalated. I have seen Nat like that. I have felt things that strongly myself, where once I lost control, there was nothing else to lose, so I would just keep spiraling downward. I know that Nat has felt like that. I have seen him cover his face after an outburst. What else could that be, other than shame?

Why is it that I can believe he experiences and understands emotions like shame and remorse, but that I can’t believe that he understands why he has moved out?

I don’t write about this too much because it’s so big and amorphous and irresolvable.

Autism hysteria
Myself in capri pants
Flip flops with a dress
Being used to Nat not being here
Trying on 12 things and not buying one
That I’m not supposed to tan
Not hearing back from editors
Hearing no from editors
Not fitting in
Spare flower beds

Today was a day for perseverance. Which pronunciation do I mean? What is the difference? One is admired, one is reviled. I like to think that in terms of my writing, I perseverate productively, and then I persevere.

So I’m happy today for many reasons. God is in his heaven — which is right here on earth — and all is therefore right with the world. I just finished writing a killer oped, which I’ve sent to the Times. All of my fingers and toes are crossed. This piece asks — a propos to the upcoming NASDAQ event on April 27th (two Autism Speaks board members will ring the bell to close the day) — are autism families better off? Is this autism awareness, or anti-autism mania?

I managed to squeeze in a 10-mile bike ride with Max! This was the best thing that happened all day. I am sunburned and pumped. I finished drying my hair just as Nat’s van pulled up, and he spilled out of it in a flourish of self-talking and Joyful House Stompies. We took Ben to his appointment and we walked to the evil Starbucks, which actually was not evil at all. They have seen the light! The same guy greeted us: “Hi guys!” and helped Nat figure out which cookie he wanted. I gave him a dollar tip, I was so happy.

And then we sat outside! In the hot sun. I worked on my essay while Nat ate and self-shouted. Everyone around us noticed Nat and his joy. Some people tried to give us a little more space. I hope they realized what unique sweetness was in their midst — and I don’t mean the cookie.

Activism and energy are pumping through my blood lately. I suppose it is because finishing my second book (a few weeks ago) and my second semester of teaching (as of today!) has opened up a space in my life, and most of my readers know how much I hate open space in my life/free time.

Anyway, yesterday I posted about wanting to put together an autism summit, and I still want to do that. I took down the post, however, because I am not ready to start dealing with comments and questions and all of the wonderful stuff that will come of this concept. So — as Bill Murray said in Caddyshack, when the Dalai Lama had granted him Total Consciousness on his deathbed — “I got dat goin’ for me.”

I walked out of my classroom, not wanting to feel the feelings that were coming up (sad that the school year was over, insecure that I am still not experienced enough a teacher) and straight up the steps of the Massachusetts State House. I figured I’d drop in on my State Representative, whom I’d called last week for an appointment. I told the front desk that I had not yet heard back, and so, here I was in person. I had had some very good advice the other day from one of the administrators in Nat’s school. This administrator is very accustomed to dealing with the state for adult services. He was adamant that parents need to know their State Reps, and be sure that the State Rep knows them. “You want to be on a first-name basis with your Rep,” he said. “When something comes up for your child, you want them to know who you are.”

So my State Rep, who already knew me from when I served on my town’s School Board, is now going to know all about Nat, and people struggling with the need for supports as adults. Budget crunch time is upon the Legislature right now, and so I had to meet with an aide instead. But I sat down with him and told him about Nat’s achievements (school and jobs) and Nat’s future needs (supported housing and employment) and how he must be allowed to continue to be a part of this world, contributing to society in whatever way he can. I’m going to send him my book and put him on my Christmas card list. As well as my Department of Mental Retardation person.

If I didn’t live so close to downtown Boston, that would not stop me. Here’s what I would do:
1) Google the House of Representatives in my State and find out which Rep was mine.
2) Get his/her phone number and email address.
3) Leave a message for a phone appointment
4) Send an email that says something like this: Who I am, my address, who is my child, his age, his diagnosis, his abilities, his achievements, and his needs for the future. I would thank the Rep for any support of autistics and their families he/she has given in the past and ask him to continue that good work.
5) I would tell him that if he needs support in the form of letters and phone calls on issues related to adult services for autistics, I could get my friends to do that, too. This not only offers help, but it lets him know that the autism community is very active.

Just imagine if we all did that. If you and your friend with the kid on the spectrum. If you, and an adult on the spectrum joined them. If then you found another, that new lonely mom whose second kid was just diagnosed. Get her to bring her kids with you. Those parents of kids in your kid’s class who nod knowingly at the stuff you tell them. Carpool over. And then..

...And can you, can you imagine fifty people a day,I said
fifty people a day walking in singin a bar of
"Give Our Kids Better Adult Services" and walking out. 

And friends, they may think it's a movement.

Don’t know just what I wanted, but I know, I wanted more.
–Carly Simon

In Dr. Suess’s story Yertle the Turtle, the main character Yertle just keeps getting turtles to pile up on top of one another so that he can be the highest and the best all around. Turtle after turtle is crushingly laid on top of one another so that Yertle can reach to the sky, but still he is not satisfied.

Perhaps these thoughts are coming up now that I can see with aching clarity just how different Max’s trajectory is from Nat’s. Comparing children. Comparing scenarios. Someone wins and someone loses. There is a painful dynamic that occurs sometimes when I’m talking to very young mothers, whereby I am assuring them that their little child is fine or appears only mildly on the spectrum, or will be fine, or something like that. I was trying to explain this to my mother yesterday while we were driving back from her gym (I had driven down to Connecticut with Max and Hannah to begin our college visits. Can you imagine this is happening to a child of mine?? Do you know what I mean?).

Even Mom, who really can grasp every new concept I introduce, within just a beginning word or two, could not quite see what I meant at first. Of course she knew what I meant, but she did not think that I was interpreting the dynamic correctly. She thought that most people were saying, in admiration, that I did a lot for Nat given the paucity of resources 19 or 16 years ago. Or given the lack of support. She was probably right, but that is not what I was talking about.

What I’m talking about is a text that runs beneath that, which carries the implication that you would never, of course, want your child to be like Nat.

They don’t mean to imply that, at least not consciously. But they are hoping for a different kind of child, a different outlook, a different set of challenges, than what someone like Nat presents.
There is nothing wrong with that! I know that! Autism is difficult, painful to deal with, sometimes impossible. We hate to see our children struggle! We hate to struggle. Yes, yes, yes.

But what happens is, I end up feeling like Nat is being seen as somehow inferior because basically he is the feared outcome. It seems almost taken for granted that Nat is the undesirable.

In the same breath, people comment on how “great Nat is doing! since last time!” and “how wonderful he is!” and I wonder which is the greater truth: that Nat is someone to admire or that Nat is someone to fear?

I am not naive. I understand that the two exist together at once. They do for me, as well. My heart will still sometimes hurt when I look at Nat and see the life he does not get to have — especially now that Max is considering which colleges he wants to attend. I cannot help comparing, just like the young mothers. Maybe it hurts when they talk to me about this because they are showing me something that is still true inside of me, that exists right alongside of all my love and pride about Nat. For as great as Nat’s life is, as hopeful as I am about his future, sometimes, I still want more.

I am a Narnia addict, ever since I plowed through the books as a nine-year-old, while my parents set up our campsite on the Green River in Utah. Sometimes I was so mesmerized by the books that I could not look up, from the backseat of my parents’ paneled Ford stationwagon, even though we were visiting wonders of the world like the Grand Tetons or the Grand Canyon.

I particularly loved The Horse and His Boy, the fifth book of the series (or the third, depending on how you look at The Lion,the Witch and the Wardrobe: first or second? It had a particularly sweet quality to it, with the two main characters, Bree (the horse), and Shasta (the boy). The animals were more prominent characters than the humans, and Lewis draws them deftly and with his usual wit and innocence.

We all love to escape to our “own worlds.” So why is it so terrible that many autistics do that too, and even better than us? Or perhaps, those of us who must escape (the way I do, into bellydance costumes and music, or novels or endorphin-release or…) bear the kiss of autism, too?

Escape is very appealing to me. So when a friend of mine mentioned this book to me yesterday, I decided I am going to buy it today. I will try to review it formally, but for now, what struck me was how the father just went off with his autistic son to Mongolia because horses were an interest of the boy’s. The trip was not about fixing his son’s autism, but rather, engaging his son in something he loved. I haven’t seen the book yet, but my friend (my agent, actually, who is always on the lookout for autism books I should read) said, “This is what you believe, too! That all parents should find their own happiness — and their kids’ — and follow that as much as possible. It might mean finding your Outer Mongolia halfway across the world or your Inner Narnia in the backseat of your parents’ car.

I don’t know how you do it
Or maybe she said did it
As we thought about our sons
Hers just sprouting
Walking about and
Suddenly
Angry.
The baby dissolving,
The dream clouds
thunder inside gathering

I knew how I did it
At that moment; I knew it all
Not talking, not looking
yes walking, strange-booking
Suddenly
Crying.
I, mother knowing,
November leaves
my heart walls thinning

How do I do it?
I can’t do it now.
Yesterday’s present,
Today’s return
Even in my sleep
Bones scrape, muscles burn
Just
Grieving.
Not for the man
But for those days of clouds
Though the son was rising.

Ground crumbling

I’m glad that I made the decision to teach Baby Bellydance one more session this year. Just the second graders, not the kindergartners. The last class of the previous session convinced me. I had each of them perform — we called it “Nightclub” — and I was really impressed by their talent. One of them is actually good enough almost to do Open Mic night at the Middle East Club in Cambridge. Were it appropriate. I’m not kidding. She smiled and made eye contact the whole time; she added these little kicks and head flips — I don’t know where she got all that, I don’t think I am even that expressive when I dance.

Then when all the parents came upstairs to get the girls, one of the students said, “Let’s all hold hands and dance in a circle!” Imagine being so innocent and happy that you want to just hold hands and dance in a circle. And so we did. I think it was that moment when I decided I had just to do it again next session. I can’t believe how wonderful those girls are. I know I am their teacher, but I also kind of love them like daughters.

Today at pick-up I ran into one of my friends, who has three little daughters. The two older girls (second grade and kindergarten) have taken my classes often. The middle one is a kindergartner and she is so adorable: dusky skin, long brown hair, mischievous eyes. She looks the way I imagine a girl of mine would look. The little trumbanik climbed up onto the bench and reached up to me, utterly confident in her assumption that I would pick her up. So I did. What a feeling, to hold an enthusiastic little child against me again. The weight, the warmth, the closeness of the sweet face. Then the baby, she’s a preschooler, barely more than a toddler, demanded her turn in my arms, so I put down the one and picked up the other; light and easy, used to being held. On my hip as if it were only yesterday that Ben, or Max, or Nat were there.

I told Ned sometimes I can hardly bear it to be done with having children. I’m not too old, I say. It is his decision for the most part, not mine. This is one area where we sharply disagree. But — I also know that I have grown a whole new life since my children have become such separate individuals. And they just shine on their own, and I stand and watch, captivated, but untethered, like a boat floating in the bright comforting beam of the lighthouse.

This might make me see like a dork (and who says I’m not?) but sometimes I just feel very full of the little things in life that make me happy. I call them “Keys to the Universe. I list new ones every few months. The following are my current no-fail, dependable things in my life that always do what I hope they’ll do, and they either are not expensive or not fattening. They are not my favorite things; that is a different blog post. No, they are my best-performing things, good ideas, satisfying products.

1) Flowers from Stop & Shop. They cost just a few dollars but they last two weeks and they are gorgeous!!
2) Changing my part to make my highlights last a little longer.
3) Manicure from BeBe Spa in Washington Square in a pale color: really lasts a week.
4) Sunkist Diet Orange soda. Tastes like you’re drinking a lollipop, no calories or carbs
5) Reese’s sugar free peanut butter cups. Just like the real thing but for 5 you only get 2 carbs. Just watch out for the “laxative effect.”
6) Extra cheese nachos from the Coolidge Corner Clubhouse. I eat the cheese, Max eats the chips. The cheese comes right off, chip (and carb)-free. If you eat no carbs, you can (probably) eat cheese daily. Check with your doctor.
7) Cocoa hull mulch. Though it costs more than the orange pine bark, it lasts far into the next season and is actually good for your soil. Smells like chocolate when first laid down, much classier — richer, darker brown — than the other mulches.
8) Raking out my own gardens and seeing what is coming up. No stupid leaf-blower noise, no money paid to lawn guys, makes you lean and muscular, and you get to see your baby planties. You blast your Arabic tunes and your Allman Brothers on your iPod shuffle, and you’re set. You sing along and your neighbors may think you’re crazy, and again, who said I’m not? At least I’m happy.
9) Stitching up holes in jeans and reinforcing the stitching with duct tape on the inside (learned this from Max, who uses duct tape on the outside of his jeans as well. Sigh).
10) Cleaning out my closets, one at a time. Doesn’t save money or burn off fat but it is so great when the junk is gone.

My dancing last night spurred all kinds of thoughts, mostly about older women and their bodies. Older women being sexy. It is like a taboo or something. It is a joke. But I don’t think it’s funny at all.

Bellydancing taught me this. How could you not like bellydancing? Is there any other beautiful dance form that features bellies, rather than abs? Or that has websites like this? It is a given in bellydance that some of the dancers are meatier. It is not unusal, also, to see dancers well into their 50’s. Yes, yes, yes. Once you get used to the person in front of you and accept how different this is from what you see in everyday media, you realize that this is great: pretty, sexy, enviably lithe and athletic. You can move the way you want to, the crazy free way you did as a kid!

When I tell people I bellydance, I find it interesting that the way they internalize it and almost in a way they forgive me for doing it, by acknowledging how, “It’s such a great workout, especially for your abs!” As if that is what makes it legitimate. Let me tell you: I don’t do it for the workout. I do it for how it makes me feel like a Goddess.

But what is my explanation? Someone once said to me, “It is a celebration of the sensuality of the female body.” And I think that’s the truth. With Valerie Bertinelli in the news so much, for being 48 and beautifully wearing a bikini, it is difficult to figure out what is a celebration of the female body and what is desperation.

I do not mean that Valerie Bertinelli is desperate, that is not it at all. I think she must be so proud of herself for losing 50 pounds; I would be, too, if I needed to lose that much. Six years ago I lost 22 pounds and have more or less kept it off — give or take 10 pounds — and I am really psyched about that. But as Ned pointed out, “she’s only in the news because of her weight! Is she doing any new acting or anything?” And I guess that’s the thing that might bug me. It’s all about her newly-skinny body and not about anything else about her. It’s as if she had no value before she was skinny. The magazines make it that way, not Ms. Bertinelli. Except when she remarks on how fearful she is of exposing her “jiggly bits” that are still there even after the big weight loss.

The jiggly bits are female! That is what bellydancers know. Bellydancers emphasize jiggly bits while also controlling them at the same time. A shimmy is basically letting your ass shake, but doing it in such a way that everything else is still — to emphasize only what you choose to emphasize. Bellydance is a lot of “you may look at me, ” and then “Now you may not.” Coquettish and playful, under the control of the dancer. It feels wonderful. It is not everything in life. It is not the only way to feel wonderful. But it is one good way. When you can master that attitude, it feels amazing.

I’m sure Valerie B feels some of this, but the media won’t let her express it. I’ll bet she has renewed energy and is perhaps in a stage of her life where she is thinking of trying all kinds of new things. It’s great when weight loss is a symptom of a greater evolution of the spirit, a shift in your own self-image and potential. My weight losses, for example, seem to coincide with finishing projects, with huge bursts of creativity. And springtime.

The problem, of course, is that this seems to be all we will hear of Valerie B. I hope not. I’d love to see her featured in a movie now, where she has a great relationship with someone, and it is not on Lifetime.

I want Warner Brothers. I want Cinemax. I want bellydancers to be taken seriously, and not to have to look like Bellydancer Barbie. I want to see 60-year-olds in bikinis, like Helen Mirren — wow. Or 70-year-olds with beautiful smiles and Elizabeth Taylor eyes — like my mother. Well, I am doing my little bit in furthering this, being a 46-year-old mother-of-three bellydancer.

One day at a time.

Friday night
Alright, alright
All my boys within my sight
Two are tall and one is slight
But God, I think, did something right.