Susan's Blog

Friday, May 29, 2009

When You Wish Upon a School

Nat is home. I just got the weekly update from his teacher and I learned that his school is making a prom for the high school age kids there! They are even going to get a tuxedo store to come to the school and fit the guys. The guys can pick out their own colors. There are girls at the school, too, so I guess they will all be getting dresses. Nat’s teacher Terese is so excited that she is going to chaperone; she said, “It gives me an excuse to buy a new dress!” But she added that, “This is something we have been trying to do for two years!” It takes Nat’s school a very long time to do anything that is off the well-worn ABA path. They are always mindful of safety issues, and that makes them very conservative with trying new things.

But lately this is changing, for the better. They now have a basketball team (the one Nat is on); they had an all-school rally to celebrate the four basketball champs (Nat and the other three); they have a new building mainly for job-training. The kids go on picnics and into the community, even to the mall to pick out their own iPod shuffles (courtesy of the Parent Advisory Council). Plus, the teachers stay far longer than they used to. I am very happy with that place.

We had his IEP meeting last week, in fact, and that room was full! Probably fifteen people around the table, because there are Residence staff there to make goals for Nat while he’s at The House. The House and the school are pretty well synced up, so now we have a real shot at enabling Nat to generalize skills he has learned in the school. That was the primary reason for having him live there, after all.

Everyone around that table was enthusiastic and full of ideas. The IEP is very comprehensive: pages and pages of goals, covering all aspects of Nat’s needs, from vocational experiences like how you enter your workplace (greet people, punch your time clock, look for your work load, using the bathroom) to self-care at home (making his own lunch everyday, making a shopping list, using the shopping list, laundry) to practical math (estimating what is “some” and “enough” money for something he wants to buy, waiting for change, and eventually, using an ATM machine).

I love those people. And they love Nat. And now, the next phase of his life begins, as his teacher creates a social story to teach him how to ask a girl for a dance and how to behave with her. If anyone can teach him that, Terese can.

My heart is in my throat. Once again, I learn that I should never let go of any dreams if I want them badly enough.

Tuesday, May 26, 2009

The Skipped Breakfast of Champions

On Sunday we asked Natty when he’d like to go back to The House and he actually chose Monday. I had given him the choice of staying here until after lunch or going back, and he interrupted me and said, “Go back after breakfast. Go back after breakfast.”

Knowing that Nat was truly happy to be going back, I felt very light when I woke up. Without that anxiety, I could do anything. It was bright and clear, and I knew right away I would have a bike ride. Holiday Monday also meant this would be fantastic, with little traffic. I told Ned and Nat I’d be back in about an hour and I also explained to Nat that I would have my breakfast after my bike ride (he still can get upset if people don’t eat breakfast before starting their day). I cannot enjoy my ride if I know that Nat is anxious and therefore things at home might be dicey. Ned says, “Why? I’m here.” But I feel that I should be there, too if Nat is getting that way. So Nat seemed not to mind that I was not having breakfast, and later on Ned told me that Nat kept delaying his own breakfast. We thought that maybe this meant that although Nat wanted to go back after breakfast, he was going to put off having breakfast as long as he could!

But yesterday was simply a blessing, a gift. I headed out into the green and blue and felt that I wanted to do something new. Many people around here bike the Riverway all the way, but I’m not sure where “all the way” leads you. Ned says it is kind of around the Fenway; that seems like not too great an area to be biking in. Besides, I wonder about the safety of the woods all through the Emerald Necklace (a series of brooks and greenery designed by Frederick Law Olmstead, a Victorian gentleman who also designed Central Park. He lived in Brookline and created many gorgeous green projects, large and small, one of which is my friend’s backyard down the street!). Until I find out definitively if Necklace and the Fens are safe, I’m going a different way.

What I did, though, was to simply ride right through Brookline, any old way I pleased. I felt like the town was mine, the world was mine. Why is riding a bike so powerful? I think because you can go so fast, just zip in and out where walkers can’t really zip; and cars can’t get in and out quickly with all of their bulk. A bike is just a pinpoint of enegy, speeding, alighting. A butterfly moving across a vast field.

There were so few cars, it was like being in a different town. I rode past many ghosts from my near and distant past. I found no cars on Tappan (birthplace of Nathaniel Isaac Batchelder); none through Coolidge Corner; and none all the way to Comm Ave in Boston. I could actually cross without using the pedestrian signal.

If you don’t live or drive in Boston, you cannot appreciate just how extraordinary that kind of automotive peace is. This is one scary place to drive or bike.

I rode over the BU Bridge and down onto the path along Memorial Drive and there I felt like the luckiest person in the world. This path stretches the length of the Charles; one side is Cambridge (where I was, Mem Drive) and the other side is Boston (Storrow Drive and the Esplanade). As you ride, you look to the right and you can see the city of Boston, which is probably one of the most charming cityscapes in the world. It is a city of old red brick and stone, from the Colonial and the Victorian eras, of new skyscrapers with shiny glass, steel, and granite or brick. The golden dome of the State House is the end point, and the Longfellow Bridge (with its salt-and-pepper shaker towers) faces that.

Riding past the Charles you get the aroma of water (not pollution), and there are people sculling the surface like skinny waterbugs. Lots of runners to dodge, but no matter. I got all the way to the Longfellow Bridge and turned around. Now I was going all the way to Harvard, and beyond. At JFK Street a strange-looking homeless man seemed to materialize from the cement and started walking right towards me. He was all muddy gray and his skin stretched over his face and made it look like a skull. I rode quickly away, thankful, as always, by my speed.

Soon I realized I was actually far beyond where I needed to cross over. I was practically at Fresh Pond. D’oh! Okay, so I had just added on more mileage. Finally I found the Harvard Bridge and crossed over, passing right by Blodgett Pool, where Nat competes for the State Games.

The whole time I’m riding I have my shuffle on and I’m whistling to my favorite songs. Every now and then I reach up and press the Forward button because it’s totally the wrong song for the moment. At this point I think the Allman’s Jessica came on, which was right for a long stretch. I was hoping to have a long stretch along Storrow all the way back to the BU Bridge, but when I got off the Harvard Bridge, I was suddenly in Back Bay and had no idea how to get back along the river; Storrow Drive (which is basically Route 93) was in full swing and there is never a time when you can bike directly onto it without taking your life into your hands.

I noodled through what seemed like a back alley in Back Bay, until suddenly, a pedestrian bridge with a ramp appeared out of nowhere. I crossed, and there I was, right next to the river banks of the Charles, now on the Boston side. I rode until I got to a boathouse, and didn’t know where I was going until I was right upon it, and there was a small, hidden, wooden footbridge that swung out right over the water. I rode that, hearing the clatter of the planks. Looking to my right there were low-hanging willows. I could have been in the countryside somewhere. It certainly did not look like downtown Boston, right next to Storrow Drive.

Unfortunately I ended up having to ride back to Brookline through Allston-Brighton, North Harvard Street, which is decidedly congested and urban. Still, at 9:45 am on a Holiday Monday, it was not too bad.

Ned plotted my route using GMaps Pedometer when I got home — ravenous because Nat had not insisted that I eat breakfast — and we saw that I had done 19.2 miles. There is probably no better way to start a day.

Saturday, May 23, 2009

Red, White and Sue

I remade these dresses so I could use them for our trip to Paris this summer… for our 25th wedding anniversary! We’re bringing Max and Ben, and Nat will go to the Extreme Sports Camp in Colorado. Probably the best solution all around. The dresses might help me overcome my guilt over not taking Nat…

Starting Off On the Right Foot

Cynthia is a friend has been gently introducing me to the world of meditation and chakras. She started off by just picking up my foot and massaging it one evening — she was at my house picking up Hannah (her daughter). She surrounded my foot with her hands and suddenly it was very warm. Then, as she pressed my foot here and there, I felt different sensations all over! I’d never had a foot massage before, and certainly never by someone who teaches yoga and has been living a meditative lifestyle for years. My foot has been troubling me (plantar fascism/fascitis) but I did not want more cortizone and I wanted a different way of looking at it — not like it’s this thing that is sort of separate from me, but with more of a holistic view.

I have often felt uncomfortable around people who believe in the New Age ideas. I think I’m supposed to be skeptical and sarcastic and say how it’s a lot of nonsense. Sometimes I do feel that way. But Hannah’s mom pointed out that I seem open to it and then I seem scared. I wondered about that: scared. Yes. I was.

So I’ve been doing some research into these ideas and I’ve been learning about overactive and underutilized chakra areas. I see how often I dwell in the emotional/fantasy regions and I allow them to be primary, while other areas (self-confidence, security, intellect) may be neglected. What I’m learning is that if you are not in balance, you will have pain somehow, somewhere.

I’ve connected this to my foot, obviously, and I’ve been thinking about the foundation chakra, the root, as related to my foot. I’ve done some meditation around this and I’ve seen and felt some surprising things in my mind’s eye. I have also been letting my mind go just upward, to the blue sky, and taking a deep breath, like a strong breeze, and I find that some painful or obsessive thoughts get blown away. I think of the blue sky as kind of like the throat chakra, which is about communication. I’ve been a bit blocked lately, in terms of my writing.

I’ve been making all sorts of connections this way, and I also have begun thinking about the chakras in terms of Nat, who enjoyed a massage at my nail spa last week. I wonder which areas are in balance for him. I wonder how I can apply this way of seeing/experiencing to Nat and find some more peace. I wonder what other people do.

Friday, May 22, 2009

Pillow Talk

I awoke with pillow fluff stuck to my pajamas. This sounds like a joke but it is really not. I guess that what happened was that I unwittingly washed these sheets with a pillowcase that had a destroyed pillow in it. In our house, many pillows are torn and restuffed and shedding, and in general disrepair, because Nat still is in the habit of using them for sexual relief. Ironic that he calls it “making privacy,” but here I am making privacy public. I am sorry to be talking about it. I am sorry, Nat.

I have to talk about it, though, because it is really worrying me, because the issue has, at last, surfaced in Nat’s group home.

I am full of this bubbling bad feeling in my throat and I don’t know what is going to happen about this problem. I think that at the moment the staff are stymied. I was told last night that they would now “keep more of a direct watch” or something like that, on Nat at night (this happened overnight). It scares me so much because I do not know how else they could possibly address this problem. We have tried for years to get Nat not to take care of himself with other people’s pillows. We have used charts that explained what he could and could not do at home. We have given him lots and lots of his own pillows. We have told him verbally the rules. We have spoken very very firmly about the rules, once they are broken. Nat’s brothers have had locks on their doors for some time. I don’t, and last weekend when Nat was home I found that my pillow had been torn apart and then stuffed back into its casing all lumpy. So now I have to lock my door? But I know what will happen eventually: he will use the living room throw pillows. That has happened, too. Or the porch cushions.

How will the house staff address this? It was difficult enough bringing it up at the team meeting on Monday. In fact, I wasn’t going to, because it had not ever happened at The House. But our school liaison, who is sharp as a tack and soon to retire, brought it up and suggested something she’d observed in another school. But this approach would not have worked for Nat. It involved restricting his privacy sessions, whereby he had to budget his time wisely. I feel that any kind of restriction is inhumane, but I realize that his method will have to be restricted.

In general, because of his vulnerability, and because I have always had to trust others with him, I have always feared Nat being abused and not being able to express his distress, or not even knowing that it was abuse, etc. etc. So now that this is a problem in The House, even though I trust them and respect them so much there, I worry that somehow this problem will either not go away, or will somehow become a worse problem.

Again, I apologize to Nat for speaking of this publicly, but we have to figure this one out and solve it. It is for his own good.

So… since I don’t want to dread Nat being home this weekend, because of this return of difficult behavior… I am going to be proactive. I have set up a velcro list of Nat’s choices for while he’s hanging out here. I am not telling him what to choose, just giving him the boundaries.

These are backwards, of course, but you can see what I did. (I guess you’ll have to hold it up to a mirror to see the choices. But you get the gist of it. One of those choices is “Make privacy with Nat’s pillow with the door closed.”
He already choose “sit on couch and walk around for 30 minutes… naturally!

Saturday, May 16, 2009

The Strange Thing We Call Motherhood

We mother in different ways. Yesterday, during one of Ben’s appointments, I took Nat to get a… a… a… manicure!! And an upper-body massage. I had a feeling he’d love it. I was right. I was very nervous, because what if he didn’t like it? What if he suddenly couldn’t take the pressure on his back or the touching of his hands? I was ready for anything. I was having a strong day. So I sat next to him while all the salon women fawned over him. He was the hit of the spa. He got his nails trimmed, buffed, and his hands and back and neck massaged. He was in a dream state, just like I had hoped he’d be.

Ben went to a sleepover party of seven other boys. Most were not even his close friends. Sport boys. But nice ones nevertheless. He had a great time, slept for about 5 hours. He’s home now, same as ever. I missed him, but he didn’t even realize he was gone. Came into the house and said, “I’m home, nerds!” And told us a joke where you are supposed to respond, “Hairy Pickle,” to every line. Surely you get it. And yet, this is growth.

And Max is putting the finishing touches on his and Hannah’s anime costumes, so we went off to Jo-Ann Fabrics, my teenage son and I. A bit strange, but … still, fun, because I was spending time with my darling boy.

Across the street they’re having a princess birthday party. A play castle fashioned out of boxes, a tent strewn with flowers, with a discarded pink plaid hairband inside. Tulle, ribbons, pom poms. I never had that, in childhood or as a mom. Vanessa is lucky.

But I’m luckier.

Thursday, May 14, 2009

Funny


I just saw this on Facebook. We were Juniors, chaperoning for the Senior Prom. It was 1979.

Wednesday, May 13, 2009

The New Lorax

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.

Flairy Fairies

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.

Tuesday, May 12, 2009

Mother’s Day/Dad’s Birthday Weekend Pics


Tabblo: Mother's Day and Dad's Birthday

Monday, May 11, 2009

Sick of Words

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.

Thursday, May 7, 2009

Don’t Play the Game

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.

Wednesday, May 6, 2009

I Like Him

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.

Monday, May 4, 2009

I Love

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

Sunday, May 3, 2009

What Raqs My World

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.