Susan Senator

One of the pleasures of Special Olympics is the parent community. I don’t know if there is any other place on earth where people just get it, so easily. I can look anyone in the eye at the State Games and they look right back at me, and we just know. I can just strike up a conversation with a perfect stranger, while standing in line at Richie’s Slushies, and it is like we are old friends.

Yesterday, just before Nat’s third and last race, we were standing there together, eager for our blue slushies. Suddenly, but typical of me, I grabbed Nat and kissed him and I said, “One more race, you! You better win!” And the man in front of me laughed and said something like this, “Yeah, forget all this other stuff, let’s see some gold medals!”

So later on, there was quite a flurry as three gorgeous young women walked by, with sequined sashes that read, “Miss Massachusetts.” Greg, a teammate of Nat’s, called him over and said, “Get your picture taken with Miss Massachusetts, Nat!” Nat jumped up eagerly and walked over. Everyone assembled around Nat and we all waited for someone to snap the picture.

Oops. That would be me. But I didn’t have a camera! Ned was off at the ATM (more money needed for more slushies). People said, “Use the camera in your phone!” But my phone is so old and crappy that it doesn’t have a camera.

Suddenly a dad in the crowd took the picture. I gave him my email address and he seemed to be memorizing it, but — yeah, sure.

This morning, this appeared in my email inbox:

Thank you, Kindred Spirit!

ps., Nat won the gold in his next race, the backstroke.

The other day Ben went skateboarding for the first time. He is a very indoorsy type, sporting pale white skin until the week we go to the Cape, where he then turns a delicious mocha brown.

Ben hates the helmet, because he hates the way he looks in it. What can I say to him to make him feel better? I hate the way I look in mine, too! Like a long-faced bug, with stupid fat curls spewing out the back. Ben is so much like me, that often I do not know what to say to help him without being a Giant Hypocrite, as he says.

So he went skateboarding because he learned it in gym class. I sat outside with my laptop (Twilight Princess). He wanted me to watch, but being the obsessive nutcase I am, I watched only with one eye.

Then Ben fell. He went flying as you only can from a skateboard that shoots out from under you. I missed it entirely, fool that I am. He came walking towards me, smouldering. “I am really glad I was wearing this helmet,” he said.

“Oh my God! You fell — on your head? !” I gasped. “Let’s get ice. Let me kiss it. Oh, oh, oh!” Oh, oh, my B. Well, I couldn’t have stopped him from falling even if I had been standing there, right? Thank God he was wearing that helmet.

That helmet is now my favorite thing in the entire house.

Mary, Mary quite contrary,
How does your garden grow?
With Birds of Hells and plastic shells
In ugly shades that really blow.
— Nursery Rhyme in My Head

One of my earliest memories is the smell of the tomatoes in Mom’s garden. She claims she has a black thumb, but my memory does not lie. That smell drives me crazy, in a good way. Another early memory is of eating garden dirt from under my fingernails: so delicious. Mom was horrified, and I suppose I had pica, but there was something so fresh and salty about its taste. Well, anyway.

Gardening is one of my passions. My heart sings when I see a garden that is just right, and by that I mean, balanced (not necessarily symmetrical, but balanced, with a feeling that it makes sense); colorful, not clashing; planted with staggered bloom times; planted with some idea of kindness as to how a plant survives; and not stupidly extravagant, for I use a Dewalt blower. Gardening is hard but is very rewarding. Getting to know the plants and the tools you need  to maintain the garden is a very tedious task at first, then it becomes really addicting. Before I even knew it, I already bought 3 gardening tools from bestoftools.com, and all of them came in really handy at times. I have very strong opinions about gardens, as you might, too. My opinions are born of years and years, a lifetime of yardwork and gardening. And general crabbiness. And sometimes jealousy.

Sure, de gustibus non est disputandum. But still — hear me out. Here are a list of garden types that just annoy the fertilizer out of me. I gotta express it, so please bear with me, and don’t hate me because I’m moodiful.

Garden Types I Hate.

Trailer Trash Gardening. When Nat was a baby, I lived in a town that had almost no taste vis a vis le jardin. Plastic bunnies, plastic flowers in the winter, flowers in a long straight line, of just red pergarlonium (what most people call “geraniums” are not). Red! Mixed in with orange marigolds. Or impatiens, planted in full sun. Or how about that horrible, ugly feathery stuff — celosia? All lined by half-buried fake pink bricks. I hate fake, I hate red in a garden, I hate annuals. They are a waste of money. They are the grass of the flower world, because you have to plant them every year and spend money on them every year. Whereas perennials are more interesting colors and shapes and they come back year after year. You just have to know what sun you have and what soil you have. Usually, for the best perennial types (English garden kinds, like delphinium, poppies, coreopsis, lavendar, echinacea, gaura…) you need full sun (a good direct 6 hours) and well-drained soil (not clayish New England and not sandy).

Lawns. Don’t get me started. They waste water, trying to keep them green. They are usually full of chemicals, to keep them looking like golf courses. People generally use fuel mowers, so they waste electricity or gas, and pollute the air. And, if you can grow grass, it means you can also grow perennials. But if one is apalled with the waste of good minerals from the soil being devoured by the harmless grass, they may consider going a round with a lawn mower, or possibly hard landscaping, to change any disorientations from any jutting structures.

I have a lawn, but it has gone to seed. I like it that way, and so do animals. I get tons of birds, squirrels, and rabbits! All the cute kinds of creatures. And no chemicals, and I use a push/rotary mower. I get a workout and it produces a soft, soothing “clickety-click” sound.

Butt Ugly Gardening. Hands down, the worst floral thing in the world, that swamp thing they plant in the containers all around my town. It rises like a scarecrow out of orange plastic barrels, on every traffic divider in town. Yet the schools had to make cuts in their budget. This plant looks like a Bird of Paradise that is about ten pounds overweight. Dodo of Paradise. Bird of Hell.

Looks Like Something From Uranus Gardening. Several houses around town have ghastly gardens. One house, has chopped-down evergreen-ish things, that always seem stumpy, like the thing was amputated from gang-green, and yet is still sick. This same house plants one shrub next to a small tree next to a flower next to a patch of fancy grass, all in a line, as angry and diverse as the queue at the Department of Motor Vehicles. Using a good and easy to use chipper which is perfect for small to medium trees is one of the easy ways to give it a good trim but if the tree is on the verge of collapse then its better to remove it, as this can only help keep one safe. These old trees usually need removing, which is why you should call Tree Services Milton, Georgia – Tree Removal – GTC to arrange examining and further action.

Stupid, Thoughtless Gardening. Another house I see just suffers from utter stupidity. Renovating as if there were no poor economy, these folks have bulldozed the entire front lawn which was ringed by full-grown daphnes and peonies. Daphnes and peonies, for God’s sake! In the trash. This should be a ticket-worthy offense for the Law Offices of Thomas J. Lavin to deal with. To add injury to injury, they planted a hedge of that ubiquitous suburban badge of the bland: boxwoods.

Too Much Money, Not Enough Brains Gardening. This house plants full-grown, fully-blooming roses everywhere, and big trees, rather than waiting and nurturning smaller plants into a long and healthy life. If you have trees that are starting to get over grown have tree maintenance perth come out and help you. They rip out whole hedges that they have planted, for unknown reasons, and then throw in a whole new row of things, and then rip them out, too! $100 a tree! They treat shrubs and perennials as if they were dandelions. I guess when I look at them, I suffer from green-us envy.

Lazy Gardening. Another house suffers from has a tiny, postage stamp property, and yet they use a lawn service! This lawn is so small they could just send their cat outside to graze and it would be fine. The lawn service guys use those decibel-blasting leaf blowers just to blow away sidewalk dust, that they could just as easily sweep up and throw away!

If I’m going to have to wait six months every year before I see the lovelies of life, then I damned well want to see good gardens. That’s all.

After taking a 12-mile bike ride, and then meeting with a friend who is creating a terrific Day program for DD adults, I wrote and wrote.

It took a month, but I’ve just finished all of my editor’s suggested edits to the MS. I really like it. It has many sequel-like aspects to it, as well as a lot of new stuff, like the voices of those I’ve interviewed, woven in. Below, I’ve pasted in the working title and chapter headings.

The Autism Mom’s* Survival Guide:
Creating a Balanced and Happy Life While Raising a Child With Autism
(*For Dads, too!)

Introduction

1. Maintaining Your Perspective While Coping with the Uncertainty of it All
2. Surviving the Great Autism-Therapy Chase
3. Spending Time With Our Kids – and Enjoying It
4. Me, Myself, and I: Why Self-Care is Essential
5. Improving Our Love Lives : Yes, That’s Important, Too!
6. You and Me Against the World: Getting What We Need From Others
7. Letting Go: When Our Kids Leave Home
8. Looking Toward the Future: Connection, Advocacy, and Perspective
9. Concluding Thoughts

Afterword
Recommended Reading/Viewing
Index

When I was pregnant with Nat, I had a dream about him, and I saw him clearly, a two-year-old boy, standing in my sister’s room in my childhood home, laughing and running away from me. I can still see him as plain as day, Dream Nat, on my sister’s kelly green shag carpet (we grew up in the 70’s after all; mine was orange). He looked exactly the way he ended up looking, as a toddler. Even so, I did not believe the dream at the time and I continued to imagine that I was going to have a girl.

Well, we all know the end of that fairy tale. I did not ever have a girl. But what a set of boys I had! And how appropriate that Nat, my oldest, would be the first to go to a prom, even though a few have been offered to Max already (but Max is determinedly Alternative, and sneers at things like proms).

Yesterday, however, we learned that Nat’s school had messed up in terms of obtaining the tuxes for the boys. I was mad. I said out loud, “There is no way in hell that Nat is not going to have a tux for his prom.” And I knew that was true. But how would I do it? I had three hours to get him a tux, in the middle of June, wedding season. I frantically called tuxedo places, but the only one that answered at 9 on a Saturday morning was Read and White. The only place that was not part of some big chain, the only place that is not a “Wearhouse,” (such an attractive place to get clothing from) or the name of a hemorhoid-soothing pad.

Like Dorothy, I asked the Read and White guy, in a panic, “Will you help us? Can you help us?” As if he were the wizard, the man behind the curtain. He was just so calm and soft-spoken, that I calmed down, too.

We drove over there and we were the only customers in the store. The 60-ish man behind the counter understood everything right away — everything and everyone — and with the same laid-back voice he’d used on the phone, he began getting Nat the pieces of his tux. He would whip out the tape measure and try to get a bead on Nat’s shoulders or waist, just in time before Nat would dance away on one of his treks around the shop. He instructed me to pick out a vest — so many lovely colors! — in a size Small of course, and Ned helped Nat get on his pants. I chose a pale baby blue.

This man was like a magical being, who materialized just when we needed him. A Fairy Godfather. Just puttering in his shop, transforming Nat for his prom. Bibbity bobbity boo.

Eventually all of the parts came together and Nat emerged from the dressing room. He looked like the young Robert Redford, in The Great Gatsby, I realized, and said that to Ned, who just laughed at me. But he really did. I had an odd feeling, something like deja vu. Then, as I was buttoning up the last of the vest buttons, I felt a song in my head, the one from Sleeping Beauty. So I said, “Why, it’s my dream prince!” and then I started singing,

“I know you, I walked with you once upon a dream.”

In a flash I remembered when I did, indeed, walk with Nat once upon a dream.

Nat’s prom, June 2009

It is morning. I got up very early, because I heard Nat talking to himself, whispering, actually. I love that sound, even at 5:45 am, (Ned feels differently). When Nat is home he just fills up the house with his big walking, his self-talking, and his smile-face yellow tee shirts. I have really compartmentalized my weeks. Monday through Thursday I am in Susan Work Mode, where I am busy with Ben, Max, writing, household, and workout. Friday comes and I’m thinking of Family of Five, of Nat coming home, how I have to be here at 4 for his van. It used to be every day. It’s a huge change.

On Fridays I have to remember to check my datebook to see what the weekend holds. I also write stuff down on the kitchen blackboard, which is all smeary with orange dust; the tiny orange stump of remaining chalk fits just between my fingertips, so writing on the blackboard is reduced to bare-boned language: 6/11 Max tutor. 6/16 Max dentist. 6/18 Ben field trip.

6/13 Max ACT. Max is taking the ACT today [a similar test to the SAT, but better in many ways], in just a few hours. He has gone through a minimum of individualized tutoring through those one of those ubiquitous Kaplan test prep factories. Those guys were actually pretty amazing, the way they tailored the sessions precisely to Max’s needs. They even called to wish him good luck.

I am newly impressed with Max and his ability to advocate for himself. He figured out fairly early on this year that there were things he would have to do if he was going to be able to do what he wanted in life. He also realized he was up against some stiff competition at Brookline High, so he has quietly but seriously gone about his junior year at a constant, successful pace. Typical of Max, with no fanfare, just sailing his yacht through any kind of waters, tan and sure, evenly and smoothly, a tidal wave of achievement in his wake.

The other item on the messy blackboard: 6/13 Nat prom. Yes, today’s the day. The House took the guys to the tux place and got them fitted. The boys picked out their own colored accessories. I asked Nat what colors he picked and he said, predictably, “yellow and orange.” I told Ned, with a smile, and he said, “Nat will be able to carry that off.”

Nat’s teacher prepared the boys all week for the dancing. She created social stories for them about the prom, from the special clothes they will wear to asking a girl to dance. Each boy has a card with Meyer-Johnson pictures and/or text reminding them of what to say. Gives new meaning to the phrase, “Dance card.” They can even hand the card to the girl, and wait for her answer.

Even if she is non verbal, how could she not say yes?

The Brookline Tab published my oped this morning. You can read it here.

The first phase of revising the book with my editor is finished. One more read-through and I turn in this draft, on Monday. After that, more minor edits follow, and then galleys. We are really on our way; I can’t believe it. When I first started writing this book, I was so overwhelmed by the task of talking to other parents about their experiences with creating happy and somewhat balanced lives in the face of autism. I knew there would be a huge learning curve for me, not only of listening to and digesting so many stories and viewpoints, but also learning how to listen and what to ask.

I actually scrapped the project for a while and slipped into a bit of a depression. I felt like worthless shit, to be quite honest. I wasn’t a writer anymore, or so I told Ned. Still, because I actually was still a writer, albeit a frustrated one, I worked on my novel, “Dirt,” for a while and figured I’d just be a novelist from now on.

That is so me. I always think that something HUGE has ended and that all is lost. Mrs. Melodrama. Well, I guess I like it that way, because then the pleasure of the turnaround is so intense!

Once I figured out how to write the thing, it wrote itself, of course. The interviews were a pleasure, though exhausting. Figuring out how to weave in the story of Sue, Ned, Nat, Max, and Ben past and present was a challenge — especially when I had to go back, once again, to Nat’s baby journals and see how sad and lost I was.

It has been really delicious to realize that I and so many others have figured out secrets to happiness, given our particular hardships. I just feel alive with the pleasure of my complete book, full of new and old friends, and also reconnecting to old and new Sue.

One last thing I need for my book (my editor requested this): a short list of books and websites that have given you a feeling of can-do, hopefulness, and optimism, but that showcase these feelings in the context of struggle, despair, sadness, and challenge. These do not have to be autism books. I am asking this of all my readers, (for example, Donna, Don, Andrew, Colleen, Pete, et al.) even those not dealing directly with autism. Give me the name of one book, website, or movie that has made you feel like life is worthwhile, no matter what your struggles are.

I probably won’t list your book, to be honest. But I want to see what produces these feelings of happiness about your life. I will probably take a look at the books you mention, just to get a feel for what inspires other people. Now that I am in the habit of finding this out, I don’t plan on stopping.

I have never felt so disillusioned in my life. I campaigned for Deval Patrick for Governor. I watched him speak at the Perkins School for the Blind, where dozens of disabled adults questioned him about their rights and their quality of life needs and he said, “Yes we can,” over and over again. He promised that things would be better under him.

Here is what the ARC of Massachusetts sent me:

Governor’s Revised FY10 Budget “Shocking”
Slashes services for 15,000

Governor Patrick released a revised budget Friday that is alarming for disability advocates, cutting services to as many as 15,000 people with disabilities.

The Governor’s proposal would decimate essential services at the Department of Developmental Services, with drastic cuts to Transportation, Day and Employment, Family Support, Autism and Turning 22 services. It also completely eliminates funding for Adult Dental Services, which are used by individuals with intellectual and developmental disabilities.

The Governor’s release of a revised budget now, in the midst of the Conference Committee deliberations, is extremely unusual. Since official revenue projections have dropped sharply since the Governor put forth his original budget proposal in January, he is mandated to file another budget based on the updated projections. People who have been involved in state politics for 30 years say they don’t remember this ever happening before.

Because it is so unusual, the impact of the Governor’s revised budget is not fully known. However, the Governor’s numbers send a disturbing message to the Legislature and the public that somehow disability services can function with such drastic cuts. The ball still remains in the Conference Committee, and that’s where our efforts must be focused, but we the Governor’s troubling proposal means that we have to advocate that much harder.

Arc President Frederick Misilo, Jr., said of the cuts, “I can’t understand the Governor’s thinking. Instead of slashing critical services to our most vulnerable citizens, he should have looked elsewhere or recommend the revenue needed.”

The Arc and the Disability Policy Consortium have come together on a joint statement denunciating Gov. Patrick’s decision to eliminate adult dental benefits under state Medicaid plans, which provides 600,000 people with dental care. The Arc and DPC stated:

“A significant portion of recipients of these services are individuals with disabilities who have no other means or obtaining dental care. These individuals already face significant barriers in accessing quality health services. Data collected by the Department of Public Health indicates that people with disabilities are far less likely to see a dentist on a regular basis when compared to people without disabilities. People with disabilities are also far more likely to be missing six or more teeth when compared with nondisabled Massachusetts residents. Eliminating dental benefits will only result in increased poor oral health, leading to infections and more complex medical issues. In the end, elimination of these benefits will result in increased medical costs for the state.”

Together, the Governor’s proposed cuts to the Department of Developmental Services will mean that nearly 15,000 individuals with disabilities will have no place to go during the day, no transportation to get to their jobs or grocery stores, no in-home support or respite care, no residential services or no transition help when they graduate from high school. These cuts include:

§ 1800 people losing Transportation services ($10.85 million cut)
§ 2,600 people losing Day/Employment services ($38 million cut)
§ 9,000 families losing Family Support/Respite services ($28 million cut)
§ 44 people losing their home ($4 million cut)
§ 624 people losing Turning 22 services – which helps them transition from school life to adult life ($6.6 million cut)
§ 730 people losing Employment supports through the Mass. Rehab Commission ($7.4 million cut)

“These cuts are simply not sustainable,” said Leo Sarkissian, Executive Director of The Arc. “To cut services for individuals and families with disabilities during this difficult period would be unconscionable,” he said.

The release of a revised budget by the Governor at this time of year is an extremely unusual occurrence. It happened because official revenue projects have dropped sharply since the Governor released his original budget in January – by law, he is required to submit a revised version that will balance the budget. The Governor’s budget does not take into account the sales tax passed by both House and Senate lawmakers in their budget proposals. .

Because it is so unusual, the impact of the Governor’s revised budget is not fully known. However, the Governor’s numbers send a disturbing message to the Legislature and the public that somehow disability services can function with such drastic cuts. The ball still remains in the Conference Committee, and that’s where our efforts must be focused, but we feel that the Governor’s troubling proposal means that we have to advocate that much harder.

Sometimes I wonder about the prevailing autism theory about generalization, about what a challenge it is for some autistics to generalize a learned skill from one environment to a different one. While I have observed that Nat does have trouble generalizing from his school to The House, it seems that his generalization to the latter, newer environment is no where near as lagging as it is here at home.

All this time I have accepted the expertise of docs and therapists who posit that generalization difficulties of autistic people are exhibited when it comes to connecting the dots, extrapolating, and jumping from one area to a similar one (I consider all of these under the category of generalizing). What I have learned over the years is that this is because of limbic system breakdowns in autistics, whereby the usual limbic function is to help information transfer from one area of the brain to the next, connecting disparate information and allowing the brain to pull it all together. (Please understand that this is only a layperson’s interpretation of something two different neuropsych types told me years ago.)

These connecting deficits in autistics’ brains, so goes the theory, explain why someone with Nat’s issues take in a lot of info but then cannot connect it in a meaningful way, and why schools then use “scaffolds” to connect info for them. Why Aspies collect a lot of facts about, say, Presidents or stamps, or bus routes, but these facts don’t seem to go anywhere.

So it is best for Nat to learn anything in a real world context, so that he doesn’t merely acquire static bits of facts that have no relevance to him, right? (This fact makes me wonder, of course, why discrete trial training is so popular. Nat’s current school uses it. In discrete trial, Nat is drilled in a certain skill, bit by bit, until he has internalized it. They then move onto the next, higher level of the skill. But if he is learning these skills in a classroom environment, how can they have meaning in their actual, real world environment? If this breakdown in the limbic system is truly the problem, then it would seem to me that going from one IEP goal to the next in a school day must make very little sense to Nat. Is he then perceiving the world as all broken up, whereby for the first fifteen minutes he is thinking about numbers, and then the next fifteen he goes to the computer and works on words and emailing? Sure, any kid does this hopping around in school, but any kid does not have the kind of challenges Nat has.)

So then if disparate skill learning is, indeed, a problem for Nat, why does he learn so well? If the prevailing theory is correct, then Nat would not be able to make sense of his world.

But he does. He does eventually link things together. His “eventually” takes a lot longer than mine but he does get it. But not all of the time. Sometimes it feels like he just has not generalized, especially when he is at home, because he doesn’t seem to understand cause and effect. He doesn’t seem to know, for example, that when he is hungry he can go get food. Or request it, but obviously for him verbal language is another hurdle. Yet at school and at The House, he seems more competent in this regard. So this proves that he hasn’t completely generalized, because he doesn’t also do it at home.

But today I had a new thought about this lack-of-generalization theory. I know he knows how to clip his nails completely independently. But when I asked him to do it, he adamantly refused. I went upstairs with him, took out the clippers, but he would not take them from me. He made me do all his nails, and I was fuming about how stubborn he is — damned Scorpios — so finally I made him clip just one, and of course he did it.

We could conclude that Nat has not generalized nail-clipping yet. Or, we could conclude that he is different at home. At home, Mommy does it. “Mommy will do it,” Nat says. Mommy does pretty much everything. He likes it that way. Who wouldn’t? He gets to be a prince here, while I do all the work!

I believe that it is not about generalizing, then. I think that there are other explanations. When he “can’t” do something, we should all be exploring other possibilities, like laziness, or teenage recalcitrance. Why not? Is it preferable to attribute lack of ability to lack of ability? I think, actually, it is preferable to attribute the behavior to wanting Mommy to do it, because that is comforting.

Who’s to say I’m wrong? And now I wonder, how many other autism theories are actually only theories (remember the one about how autistics don’t like hugs? or can’t love back? Hah!). I truly believe that the theorists need to ask the Mommies sometimes.

The reasons — the reasons that we’re here… –Earth, Wind, and Fire

When people would say to me, “Things happen for a reason,” I used to nod politely but I would feel annoyed. What’s the reason? Who decided that I needed this thing to happen?

I’d think that, and then deep down, another part of me would knock knock on the hard walls of my brain and say, “You know you believe it.”

So let’s say things happen for a reason. Maybe I like to think it because it comforts me. It makes my life have a kind of meaning. Funny to call it “reason,” because it really has nothing to do with reason. Things happen kind of organically, taking an unpredictable path. Things happen by feel, really. But then you realize that they are connected! We make sense intellectually about something we feel intuitively.

Nat, Max, Ben. Why were they born to me? Totally random, eh? Yes, but — ? Why was I born to them? I feel like they form a complete Boy Unit, for me. They are each so different, that I get a different and satisfying experience with each one. But that is so egotistical, to believe that they were assigned to me to teach them, to make me happy. Because the thing is, I learned from them. I learned how to be a mother, how to think for others, protect them, put myself aside (at times) for their sake. They told me when I had to do that, and I had to listen.

Things are never what you think they’ll be. I was wondering what exactly led me to the Baby Bellies, to come up with the idea that I could teach? And teach bellydance, yet! To little girls. Chutzpah! Hubris! But somehow, it worked out. And yesterday, I tasted the fruit of my labor: they had a stellar performance.

This was a different recital from our usual. It was not a group number. Each one choreographed a bit of the song “Habibi Ya Einy,” sung by Nourhanne. They stopped at a certain, undefined point, but I could tell when each one was done. It was, of course, symbiotic. We just felt it.

I would announce each act, with the curtains drawn, and then the curtains would open as the music swelled, and either the girl would come dancing in, or she’d already be there, center stage, when the curtains parted. There were about fifty people in the audience: all the parents, some grandparents, some curious girls, and a classroom of Extended Day kids. [In this picture, they are taking their bows, all together on the stage.]

There were five acts in all: Hannah en pointe; Elize spinning; Eva and Kaisa as the Ocean Goddesses [the name changed yet again!]; and Julia and Sophie doing their original dance step where they begin as two bumps under a set of veils. Also, Kaisa decided to improvise at the end! I could not believe it. They are all so talented, and I’m not just saying that. They really learned! I really can teach!

My point, however, is that depression led me to look for a way out; this led me to bellydance; bellydance led to a whole new way of thinking for me, a new way of looking at my body, movement, music, creativity, and being one with — something.

This led me to teach, so that others could feel the way I do. I ended up learning from them, to feel the way they do. I learned all about playing, about just giving yourself over to whatever comes into your head at the moment. Dress up the stuffed dogs in hip scarves. Wrap yourselves in veils and become a bride. Change the name of “the camel” undulation to “the Figs” because your stomach looks like Figs the dog’s curved stomach. Laugh when your teacher does a shimmy, because her butt shakes! It’s all in the day in a life of the second grade girl.

I moved to a new level of being one with–, from them. Playing is exactly how you do that. You forget YourSelf and you just plunge into It. I sound corny, saying, “Children teach us as much as we teach them.” Well, I’m not saying that. I’m saying they teach us much more.

I just wanted to take a moment to honor someone from my family’s life who just died. This was Yelva Person, my father’s secretary for 10 years, but who remained a fixture in our family for decades. My dad was a principal at a high school in Fairfield, Connecticut, for years and years, and Mrs. Person (the unusual name is Scandinavian) served as that all important school fixture: the gatekeeper of the office. We all know a formidable secretary from our school. They are often tough as nails but soft on the inside.

Mrs. Person was an exception: gracious and kind on the outside and on the inside, but equally effective as the usual school office Cerberus. She was always smiling. She baked my family cookies every Christmas, my first experience with real Christmas cookies, a treat I have never been able to adequately recreate. We visited her daughter on our first trip Out West, when I was seven, and I remember it was fun. Mr. and Mrs. Person came to my wedding. They were just part of the family, that’s all there was to it.

Another thing about Mrs. Person is that she kind of symbolized for me the years in my childhood when we were this very strong, self-sufficient unit of four: Dad, Mom, Laura, me. Everything and everyone had their place in my universe. Dad was the king, no question. He was also the king at his school, I believed, and I think he was a beloved one. I felt like such a big shot, a little girl of 6 or 10, striding into Dad’s school and playing in his office. Mrs. Person had fluffy little school mascot toys that I played with. I know she spoiled me when I visited. I felt like royalty there. I was so proud of my dad, in awe and in love. Mrs. Person is one big piece of that picture.

Yelva and Eric were married for 66 years. My dad told me that she died just as she lived, sweetly and softly, holding Eric’s hand. I just want to say goodbye to Mrs. Person, you really were quite a remarkable person.

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.

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.

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…

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 and a massage for backpain 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.

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!

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.

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