I was crying a lot this past week, but it ended well. Does that make it okay? At some point, do we run out of I did this, but at least it ended like that. Is there a limit on how many bad days one member of a family can have?

Writing this now I can scarcely remember why I was so weepy. But I do know that it had a lot to do with feeling disconnected from my family. I felt so irreconcilably different from the four of them. They — we — are all such islands. But I’m an island that wants at least to be a peninsula, attached somehow. (What an ugly, stupid metaphor.) Ben is enjoying his winter vacation from inside the depths of Hyrule. He surfaces occasionally for  12 o’clock breakfast or a 3pm lunch. He has too many oreos, not enough exercise. Yet he is increasingly muscular, taller than me, lanky, gorgeous acne’ed teenager. He still lets me in a little, showing me cute or freaky stuff on the Internet.  He is deeply attached to me, somehow; I feel it.

Max is home from college for the month, out every night, up late, sleeping late, when he’s here he’s with his girlfriend. We did have him to ourselves on Thursday, and on that day Ned and I got him to take a walk with us. We went, of course, to Starbucks. Even without Nat that is a perfect short walk, up our street, down the hill, across Route 9, and into The Village. I get a skinny vanilla latte, Max gets a hot choc, and Ned gets decaf and a slice of the cake-like bread. We share it, cramped around a small table. I love this.

I don’t know what we talked about; maybe the different genres of computer games. Some about Max’s classes and floormates. I just drank in the beauty of him and his life, along with my toasted-marshmallow-flavored drink. We walked home and got there just in time for Nat’s van.

That night Ned made dinner, not me. One of the things we realized, he and I, was how much I’ve been hating dinner. Really hating it, not like funny-hating it. It’s been almost painful for me, from 3pm on, to come up with an idea of what each person will actually like, something not too fattening for me. To then wait until around 6:30 to start it, because Ned has to finish work. Not to snack until then.

And then, the dinner itself. If all the boys are there, it can be just as bad as if none are there, because they all have their own things going on, and they are not sharing nothin’. I sit there, with my spare plate and look at their full plates and their full lives — even Nat’s is full and ahead of him, but is it the life he wants? — and not knowing that, and yet seeing them in their fullness and potential, I want to leave.

The geography cure, a long-ago therapist once called it.  How can I be this ungrateful for everything I have? But there it is, I’d been getting in my car all last week and fantasizing about driving and driving, away.  I finally told Ned; “told,” ha, that’s a good one. We had a huge nasty fight. They all heard it, Goddammit.

How much more can I say I’m sorry?  All I can do is keep trying harder. But then my life feels like one big TRY.  All that helps is for some time to pass, for them to see that I’m okay, it was just a bad day.

Usually I clear my plate before everyone else and clean, clean, clean while they eat. My mind is on being in a different room, away from them. That makes me sad, and I don’t know why I feel that way. What I know is it is so different from when I’m in Starbux with them. Our  Starbux date is a moment in time, aware and crystalline, surrounded by earthy chocolatey smells and people on break, just wanting to be there for that brief time. Creature comforts of heat, of sweet aroma, and of satisfying our hunger and thirst. Starbux is the new communal cave, where the hot drinks bond us like fire.

When Ned made dinner Thursday — and it was a dinner that Max came up with and helped with — I felt so privileged. I felt royal. I was the Princess, the one female in the house, and it was special that night. I found I could sit, and stay, linger and listen. I could live there, after all.

The Washington Post ran this oped of mine on Christmas Day:

Tiger Mother to an autistic son

I was reading Real Simple waiting for Ben at the dentist, an article about meditation, of all things. I don’t meditate, I medicate. Ha ha. No, the truth is, I’ve always wanted to meditate, but I didn’t really know how. Blank your mind? Empty your mind? In my brain, the minute one thought leaves another one moves right in. Sometimes there is overcrowding.  My head is like a poorly-run group home, where the uneven ratio of helpful thought to overly active impulses spells trouble most of the time.

My tumultuous emotions and high stress levels make me a perfect candidate for meditation, and so I read the article with great interest. The bit that stuck in my mind the most equated the meditative state with watching a river flow, where your thoughts are like leaves floating by.  Leaves floating by, I thought. I can do that.

Since reading that I have found several opportunities to try this out. Once was after a particularly disappointing phone call. I envisioned the stream and the leaf and noticed that this metaphor allowed me to have a kind of distance from my feelings that I have never felt right when something bad has happened.

I tried this several more times; there was no emptying of my head, no need to push thoughts away to maintain some kind of blankness. Rather, the simple practice of picturing the curled brown leaf passing along on the curve of the current gave me a recurring separation from the event. One day later — today — I had the realization that what this was doing for me was showing me for the first time in my life that feelings, events, pass by. I am not my feelings. I am not what happens to me. I am something else, next to, or underneath the feelings.

My insight stops there. I’m not ready for more. I have a friend who is a master yoga teacher, a longtime meditator, a person who is  beyond being crushed by others and brought low by weaknesses or events because she knows, just knows, that there is so much more to us, to life, than this particular body, this particular moment in time.

I have not been able to listen to her. I don’t like those thoughts of hers. I want to matter, I want my moment in time to be utterly unique and momentous. In fact, she and I don’t really talk to each other anymore, because of these large differences in our outlooks. And yet there is some comfort I have found from my little leafy stream exercise, some measure of sanity and sweetness I am getting from that small distance from — but not repression of — my bad feelings.

The phone rang a little while ago and it was Martin, from Nat’s former group home at school. He was just calling. He wanted to know how Nat was doing. I told him all the news — the surprisingly easy transition to home, the new job at CVS — and Martin was clearly delighted. He spoke to Nat himself, but I could see that Nat was worried that this call might mean he was not going to his “new apartment in winter,” which is what we are calling his new group home. A while back I told him it would happen in the winter, and so this is what Nat calls it.  (All I can say is, the thing better be ready soon, because today is the first day of winter!)

I hung up the phone and felt my tight chest, the clogged feeling of an overstuffed heart. I am just so blown away by what people are capable of, by the reality of love. I realized that love was one of those feelings that does not flow by me, however. Love gets stuck on a rock or in a throat.

I sat on the corner of the couch, in the light, near Nat. He was leaning on his hand, looking at me. His brows were raised. I said, “It was so great of Martin to call.”

“Apartment in winter,” Nat whispered.

“Yes, darling, of course,” I said. “Martin was just calling because he loves you. You are still going to the house, the apartment that we saw on Saturday. Soon.”

“Yes.”

“So many people love you Nat.”

“Yes.”

We just looked at each other, and I felt how special he is, that particular human being, this particular moment, this life.

Here is a new book that I highly recommend: The Thinking Person’s Guide to Autism. This book is savvy, witty, compassionate, and useful. Contributors include longtime mom bloggers Kyra Anderson, Jess Wilson, Kristina Chew, and someone named Susan Senator, for starters…Here is more info on it:

Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For.

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

Thinking Person’s Guide to Autism is the book we wish we’d had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

About the Editors

The Thinking Person’s Guide to Autism editors are Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities. This project has its foundation in their collective parenting, science, education, and self-advocacy experience.

For more information or review copies of THINKING PERSON’S GUIDE TO AUTISM, please visit www.thinkingautismguide.com/p/press.html or contact our media relations department at 650.260.8742 or thinkingautism@gmail.com.

Publication information:

Available: on Amazon http://is.gd/TPGAonAMAZON and at Createspace.com http://is.gd/BUYTPGA

Paperback: 370 pages

Publisher: Deadwood City Publishing (2011)

Language: English

ISBN-10: 0692010556

ISBN-13: 978-0692010556

###

Strange how I’m a perfectionist in some ways and Ned is a perfectionist in others. While Ned worries deeply about getting tasks done correctly — whether projects at work, paperwork at home, fixing things — he does not worry overmuch about how he’s doing with the kids. I, on the other hand, think of myself as a “big picture” person, which is really code for “lazy”, meaning, I’m someone who thinks big and is perhaps a visionary at best, but sloppy and screw-the-details at worst. But when it comes to the kids, my worrying is a bottomless pit. I don’t know if I ever rest comfortably on the ground of an interaction with Nat, Max, or Ben.

People say that kids are resilient, and I should believe them. But I don’t, deep down, in my non-resilient little girl heart. I had a mushy center, I was bruised easily, and I held/hold onto grudges. So because I don’t know how to let go of stuff, I fear that my kids don’t, either.  I know I must be wrong, but reason gets stuck in my soft core.

I saw some shopping carts at the supermarket today, the kind that have little cars attached for a toddler. I know they did not exist in Nat and Max’s day. But Max insists that they did, and that I didn’t let him ride in them. Why wouldn’t I? I would have, but they did not exist! Where does this sad little memory come from? He also reminds me of how I “killed” Seater, Tiny Mouse, his imaginary friend. I may be guilty of that. My accessory, however, was our pediatrician at the time, who scared me by saying that imaginary friends should be gone by age 6. This was back when I had no internal certainty, and so I believed her, and kept asking Max if he knew that Seater wasn’t real.

Today I was remembering that stuff and feeling sad again! But then a thought interrupted, saying, “Get over it, Max.” And then:  “Actually, get over it, me!” Then I felt this relief rush in, and said out loud, “Yup, you were not a perfect mother, not at all. Nor a perfect wife, God knows. You do the best you can, under the circumstances…”

What are “the circumstances,” I then asked myself. The stress from Nat and autism? But the clear, clean rush of thought swept in again like a raging river, washing that one away: “Can’t blame Nat. Take responsibility, but don’t blame anyone.”

Where did this voice of strength and reason come from?  I don’t know.  But I look at my two older sons and I see who they are. Max has adjusted so well to NYU and living in New York City and all that comes with that; he feels centuries away from me. Competent, clear, confident, content. Walked into that dorm room and never looked back, just like when he was a little guy starting preschool. I was the one sobbing outside in the playground.

And Nat. One month out of school and he’s surging forward. No more school, the end to decades of academic structure and one-to-one ratios.  Back home, with his flying-by-the-seat-of-the-pants family. Good stuff for someone who needs consistency, right? Yet he seems fine. Starts his Day Program, all new people, new outings, new tasks, new workplace.  A ratio of around one to seven. He just goes. Today his transportation started up, and off we went in the new blue van packed with 10 other adults going to their Day Programs. He did not hesitate; he just climbed aboard.

I’m the one who’s stressed, who’s always wondering, “is it okay? Did I do that right?” Terrified at how I’m screwing up my children. Wanting to be perfect. It’s an illusion, though, that if I’m perfect to them, they will grow up with no problems, and everything will go well. It is nothing but magical thinking. Perfect cannot happen. Nor should it.

Today — at least for now — I’m all business. Maybe later I will write about Nat. But honestly, If you like this blog, you will love my novel: Dirt, A Story About Gardening, Mothering, and Other Messy Business.  There is a Nat-like main character in it! You can order it easily from Amazon, at this link. If you like it, write a review on Amazon, give it as a gift, and maybe I’ll be able to sell my latest autism book, about adulthood!!  I need to impress a publisher…

It is a guaranteed thought-provoking experience. What have you got to lose?

I know I’m kind of obsessed with Nat, with figuring him out and expressing my feelings about him. I’m so glad to have a blog, so I can get it out, tease it apart. When I get sick of being a blogger, but I want to write, Ned asks why I don’t just write it for myself; why do I have to publish it on the Internet?

Because it wouldn’t feel as real to me. The stuff I write that I don’t show anyone — that stuff feels stupid, half-assed. As I write this I’m wondering if this one will fall flat. But I don’t think so, because I have that feeling that there’s a pull in here somewhere.

I need to say my thoughts out loud — in this case, onscreen. But when I can’t write, I talk to myself. Especially in my car. That’s when I figure a lot of things out, driving to some dumb place or another. It isn’t enough just to think it: I have to say it.

So I wonder if it’s the same for Nat, the way he talks to himself in his own language of stretched out or half-swallowed English. Does he have to hear it out loud? Does the out loud make him feel more here? Less lonely? What is Nat’s usual state like? He moves from room to room, bed to couch to chair, and then maybe perches on top of our coffee table. He makes his sounds, very high-pitched and then low. Suddenly there will be a word I recognize, and I often jump in and nab it. Sometimes he likes it when I do that, sometimes he doesn’t.

I think that he doesn’t like it when there is an expectation that he respond a certain way. I think at those times he does not want the hand offered to him. He wants his words out there, and just out there, moving forever outward into space. I, on the other hand, need to throw my words outward like fishing line, hoping they’ll catch and bring me something lovely.

In this way we are very different, Nat and I.

This dynamic played out in two different ways today. This afternoon I told him that his one-on-one wasn’t coming. He said, “Heeyah John.”

I said, “You’re thinking about John.”

He said, “No.”

I said, “But you said ‘John!'”

“No-oo.”  And he put his hands over his ears.  I thought I’d upset him, but then he started laughing, jumped up, and left the room happy.

At dinner tonight Ned started talking about how he was going out to a Django meetup.  “When will you be home?” I asked.

Nat picked his head up from staring at his food and said to us, “Yes, Daddy will be home.”  To me, this meant: “I’m anxious (or curious) about you going out. That’s different from our usual.”

“Well, Daddy’s going out now, but he’ll be back at 9,” I rushed to explain.

“Yes,” Nat said. And then, “heeyah home.”

Okay, he said “home.” But I remembered this afternoon and I didn’t want to pop this sweet bubble, this moment of mutual understanding encased in the most fragile of membranes.  So I said as quietly as possible, “Yes, he’ll be home at 9.” I didn’t look at him for long, and I did not ask it. I did not put it to him with any expectation or bridge to me. All I did was blow out a gentle reassurance of the temporary quality of this break in the routine.

And he looked at me nervously, knowing what I was doing.  Without my expectant sentence swinging upward on its last words, hanging heavily in expectation of him, he was okay with my understanding him and repeating it. Because it was not too much pressure on him, the pressure of connecting, he could simply answer: “Yes.” It makes sense to me. In a world that judges your intelligence by how well you spew words, it must feel awfully threatening to be on the spot if your words lay hidden from you.

Naturally I’ve been worried about how Nat is doing in his Day Program. Now that he has his transportation lined up, I don’t drive him there, so I don’t talk to the staff. I’ve asked them to use a notebook to give me just a thumbnail of his day, but neither they nor I have been very good at keeping it up. Now I email them.

It’s never been very satisfying relying on Nat to tell me things, especially accurately. He just doesn’t like to talk. I’ve actually asked a few higher functioning autistic adults how I can get him to communicate, and the answer pretty much was, “if he doesn’t want to, don’t make him. Often autistic people don’t see the point of/cannot manage small talk.

But my questions are anything but small. What Nat does with his day is big. Big talk. I just want the basics. So I sent the Program Director an email with a lot of questions. She answered them, and then I fired more at her. Those she answered as well. My main concern was about Nat’s work outside of the DayHab building. I told them I wanted him to do volunteer work even when he wasn’t in the Day Program. (You see, DayHab is different from Day Program, even though they operate out of the same building, through the same organization. But DayHab is Medicaid money, and so there are requirements and regulations about how it is spent. A consumer cannot work in a DayHab; he has to do rehabilitation and therapies, anything that helps him function. Day Program, on the other hand, is funded by our state Department of Developmental Services, DDS. Day Programs are most often work programs, jobs with transportation and a job coach.  Nat is doing a DayHab/Day Program split during the week.)

I chose this particular DayHab for two reasons. One is that Nat’s old friend S is there; S’s mother is an autism power mom, so I trust her choices for S. These days S works in a CVS. When I heard that I was so psyched for Nat’s future, remembering his success at Papa Gino’s.  The other reason I wanted this program is that they have a unique view of what is therapeutic, and so they get their clients volunteering sometimes. No pay, no job coach, just a small group with a staff person. Perfect, as far as I’m concerned. But I don’t know if Nat is doing that or other things.

Since my emailing, I have a better idea. And it turns out that Nat has told me everything accurately. Two weeks ago, for instance, I asked him what he did after Meals on Wheels. “You went swimming,” he said after thinking for a while (the wait time for conversing with Nat is very, very long.)

“What? Swimming?” I said. “But I didn’t send you with a suit!!  What did you go in?”

“The pool,” he said. Darling!

“No, Nat, I mean, what did you wear?”

“A towel.”

“I mean, what did you wear in the water?”

“Bathing suit.”

“Really? But I didn’t send you in with your bathing suit! Nat, what color was the suit?”

“Brown,” he answered.

Jeez. So what the heck did this mean?

I asked the staff the next day. Sure enough, they told me they swim once a week, usually Thursdays.

“But he didn’t have his suit!” I said to the Director.

“Oh, we have suits here. And towels,” she replied.

“So — what color are they?”

“Brown…”

Ah, accuracy. I am having these kinds of conversations with Nat more and more. Interestingly enough, we have also decreased his Risperadone.  We found we kept forgetting the afternoon dosage, and realized that Nat was no different without it, so now he has less. I believe that the Risperadone acts like a sedative, and makes him less inclined to speak. What would happen if he were off it completely? This is a goal of ours, to find out gradually if he needs it anymore. This kind of progress makes my heart float.

So tonight I asked Nat where he went to work today. Long pause, then “CVS.”

I knew this was right because the Director had told me. “Oh, wow, CVS! Great! And what do you do there?”

Longer pause. “Put milk away.”

I thought about this. Yes, that’s right, didn’t they tell me he was stocking the coolers? What an excellent choice for Nat, the master of cleaning up and putting away!

Then I threw in: “Who did you work with?” I was thinking of the staff names, when Nat said, “S.”

I realized he meant his friend, S, who does indeed work at the CVS!

Can it be that this is actually working out?

Ned wakes up with a wheeze and a cough; I go to bed with the same. I’m forever cleaning dust, wiping it away, sucking it up. I hear that we’re dust, too, somehow. Benj used to say that dust was skin cells and the Bible agrees. So many actions in our lives are these small repetitive movements, of living, dirtying, cleaning, renewal. Movements and moments of tiny living, tinier dying.

This does not depress me right now, though. The other day I thought of the phrase “Sparks in the darkness,” from the James Taylor song There We Are:

There we are,

sparks in the darkness,

speaking of our love,

burning down forever and forever.

This song has particularly sweet meaning to me because this was one of the first songs Ned shared with me when we were first almost in love. I didn’t like James Taylor back then, but once I heard that song, I did. The lyrics are simple, innocent; his voice, just plain James, unaffected.  He reminded me so much of Ned, that was (is) Ned’s essence to me. I’d never met anyone so pure, so still, so sure. I was consumed by a soul-squeezing, breathless love almost as soon as we met, that just grew more intense as we remained friends only — his request.  For the better part of a year, I hung back, my brain screaming, “Why? Why? Why can’t he love me?” Until finally I let go of it. One spring day as we went our separate ways — he to 1920 Commons dining hall, I to class, I thought, exhaling deeply, “Okay. If that’s what it has to be, I’ll take it. I love him no matter what, that’s all there is to it.”

Just like that, everything changed. Just two days later (I think), he became my boyfriend.

That was thirty years ago. It’s not just the years that have changed us, it is everything. These days so many of the couples I know are just barely together anymore. There’s not that strong a line between divorce and just kinda staying married. I think that I have not really understood that, not really known about that, until recently, when the stress in our life pushed upward to a whole new level, and I became very very sad. The uncertainty about Nat just weighed on me, pulling at my heart, making me hurt inside all the time. I kept thinking back to a different period in my life, when I felt like I had it all. This, surprisingly, was not when I was a young woman newly in love. The had-it-all time was more recent than that, around the time my first book came out.

I went away for one night, all the way to New Jersey, to my sister Laura. She’d heard a few words out of me on the phone and she said, “You need to come here.” So I did. She fixed me up. I slept in her guest bed. The thing is, she has five cats and I’m highly allergic. I didn’t care. I didn’t care if I wouldn’t sleep all night, I had to be there. Laura, being a doctor, had allergy stuff for me and so it worked out. I woke up in air dusty with cat dander but I was okay.

Last night Ned and I went together to drop Nat off at social group, because we figured we could catch a little dinner out during the time he was gone. Because we were early, we sat in the dark of the car together waiting for people to arrive. A young mom pulled up and and got out to pick up her child and I thought of the complicatedness of her life, this little task, all the intricate parts that made up this little task:  the car and its own engineering and troubles, locking the car and what that implies, being unconscious of all that as she rushes in to get her little girl. Maybe not even thinking about her little girl because she was thinking that there was dinner that still had to be made, for the family. Maybe her husband was a pain in the ass and never helped.

I thought of our busy-ness. I said to Ned, “We all do this, we all think we are so important, every little thing is so important, yet we will all be gone one day. And that’s really the way it is. Everyone always thinks that their own bits of their life are so important. It’s what we do. It’s what humans do. Every animal does his thing; humans create intricate lives. But still we are only a tiny tiny part of all the others before and after us. Sparks in the darkness, remember?” He did.

It made me feel good, like I was part of something, even if I am ultimately just dust, part of the mass that makes up the universe. I felt  lucky to be one of the living doing my little thing, right now.

Last week I wrote this letter to the Editors of the Boston Globe concerning the importance of Medicaid.  Today it was printed:

To the Editors:

THANK YOU for the strong message about the dangers of turning Medicaid over to states and block grants ( “Medicaid has a problem, but block grants won’t solve it,’’ Editorial, Nov. 25). The Republican sound bites about the waste in the Medicaid system are often based on political motives, not fact.

As the mother of a young adult with autism, I depend on Medicaid to fund my son’s day program. I would invite any political candidate to visit one the state’s programs and look at what they do on spare budgets. Look at the remarkable ingenuity of programs that provide entire crews of unpaid volunteers to work for valuable businesses like Meals on Wheels.

Anecdotes on waste should not indict an entire support system. Nor should quality vary so much between states, as it would under the block grant proposals. Though far from perfect, Medicaid is the only thing standing between so many disabled people and a wasted life in aging parents’ homes – or even a life on the streets.

Susan Senator