Susan Senator

Career Blues. Dissatisfaction with the world vis a vis the plight of the disabled adult.

I want to do stuff with my life but I don’t know how to start. My days are chopped up by kids, chores, and then some free moments where there isn’t really enough time to do something productive. I’m writing this now as the kids start their showers, hooray for showering kids. Welcome to summer vacation. Don’t get me wrong. I love it all. I love summer, more than most things in life. I love feeling hot, being tan, wearing shorts and sandals and willingly going outside!

But — I hate limbo. I hate indecisiveness and that is where I am right now.

I keep thinking about starting a 501C3 called “Autism Works” or “The Disability Works.” How do you start such a thing? I want there to be training for Personal Care Attendants and Job Coaches. Incentives for employers to hire guys like my Nat (other than his pretty face). I want to be able to supplement Job Coaches’ salaries so that good people will be attracted to those professions. So I need a big endowment, I guess. I need to write a mission statement and get planning.

I don’t think it makes any sense at all that post-22 all entitlements under the IDEA end. Why should they end? Why spend all that money and provide supports and resources to educate our kids if they then can’t do anything productive when they finish school because they still need the supports that they had in school (because they are still disabled, duh!).

I’m now on the Adult Services Subcommittee of Autism Speaks. Our first meeting is July 5. I want to pitch these ideas but I don’t know how things work there. I am the new guy and I hate that! I’m sure they have their agenda already and their way of doing things and I don’t want to be coming out of left field, but that is where my field is!

How can I educate people out there, employers, about why it’s a good thing to hire disabled people? How can I teach others not to be afraid of seemingly bizarre behaviors or apparent lack of communication? Are articles the way to go? Or am I supposed to become some kind of lobbyist?

Or is this second book going to happen? When? I have emailed my agent twice in two weeks. I feel so antsy. I feel time slipping by, for me and for Nat. I want to accomplish something, something more than the book I did now two years ago! I get people writing or calling me everyday asking for help with their kid, their situation. I WANT TO HELP but I don’t know how to harness all this energy and passion.

I feel like a dilettante. And like I’m going nowhere, too fast.

We went to New Hampshire for the day, to Ned’s dad’s house, for a memorial service for Ned’s Uncle Dick, who died during the early spring. For much of Ned’s childhood, he spent Christmases with his brother CB and sister Sarai (today is her one year wedding anniversary, hooray!!!), his Dad, his step-mother Anne, Uncle Dick (Anne’s brother), Aunt Marie, and four cousins, Ellen, Rich, Suzie, and Ted. When he first met me and I told him my name was Susan Linda, he said, “my favorite cousin is Suzie Linder!” It was fate. I went with him one Christmas, back in 1982, when we were first dating. It was my very first Christmas, and an introduction to a big, close family, much like mine (lots of in jokes, pranks, traditions, and obvious love). Uncle Dick was cranky sometimes, but also charming and funny. It took me a while to get used to the whole thing, because they were like my family and also unlike my family, and I was just a sheltered girl. But Dick was truly an institution and we will all miss him.

Gathered in Tamworth, New Hampshire was Ned’s extended family and many of their friends, for not only does Ned’s dad and stepmom Anne live there now, but Anne and Dick also grew up there! It is one of those quintessential New England towns, with meadows, mountains, and a quaint white church in the middle of a field. Ned’s cousin Suzie now has two delightful children, who are now great friends with Benji. Other cousins were there, whom we had not seen since Nat’s bar mitzvah or even our wedding (almost 23 years ago!).

It was a brilliant, sunny day, and a lovely service. Many of the family had brought small tokens to place in the grave with Dick’s ashes, to bury him Pharaoh-style. Ned brought the first five stanzas of The Night Before Christmas, which Dick always read to the kids at Christmas, with tears in his curmudgeonly throat at the very end. His daughter Ellen poured scotch in, and then we all tried some. It was a very unusual ceremony; warm, funny, sweet, brainy and quirky — totally typical of Ned’s family.

Nat paced the cemetery and grinned in the warm sunlight and because of all the familiar faces around him. Ned’s family knows him very well by now and it is very easy to be among them.

We also made an unusual stop on our way home.

Here is Ned’s Tabblo of the kids, and me, his favorite model.

Don’t obey your shoulds.
–Dad

I’m almost afraid to say it, for fear of it changing, but today marks the end of the second day of no outbursts from Nat. He has only been happy. We have been steadily using our daily lists to describe what we think will happen, and this seems to be working for him. Today I wrote about the fact that Max and Ned would sleep late, and that Ned would be taking a trip to the camera store after breakfast.

I realized, just before Ned was to leave, that I wanted to get some exercise. This was not on the list. I wanted to run at the Reservoir, and I thought that since Nat seemed to be so content, maybe he would want to run with me. He has not been interested in running or riding bikes for so long; his lack of interest in those things has coincided with his storminess. So I thought, since the outbursts have gone away, perhaps this also means that his interest in the outdoors will be back. It felt a little risky, though, especially given that it was not on the list.

But Nat agreed to come with me immediately. And here is a great thing I’ve discovered about getting Nat do things. When I want to get Nat to do something because I really want him to just have some fun, he almost always agrees to do it. But when I want him to do something because I feel that he should be doing something “productive,” he is inclined to resist. So I kind of knew(hoped) he’d want to run with me because of how much I wanted it to happen. And I wanted it to happen because I was feeling reconnected with him now that the lists were making him feel at peace.

I had to find him some running clothes and shoes, and surprisingly, he fit into my running shoes! Somehow we have the same size foot. We drove over to the Reservoir and I tried to get him to stretch with me. Then, as soon as we started on the gravel path, he burst ahead of me, with arms waving and silly talk going wild. He was happy.

I ran behind him, hoping he would be careful as he passed the little building that is way too close to the path, leaving you no choice but to run treacherously close to the water. He was fine. By the end of the first mile, I asked him to slow down and we walked a little bit. Then we started the second mile, and he was a lot slower this time. Soon he was behind me, but still seemed happy. At the end of the second mile, I wasn’t feeling that great, which is unusual for me when I run. It wasn’t so much that I was tired; it was a feeling of just not really enjoying the run, maybe because I’m used to running alone and with my iPod and this time I was just a bit too nervous about Nat to really get into it. I was glad to have gotten him running, and I kept thinking, “I can’t wait to tell Dad,” but I did wish it had been a little more fun for me.

He caught up with me as I started to walk. His hand touched mine and he said, “Walk with you.” I kept my hand loose, not returning his touch, because I figured he did not mean actually to hold my hand.
“Sure, let’s walk, Nat,” I said.
His hand bumped mine again. “Walk with you,” he said.

He wanted me to hold his hand. So I did. The tiniest tears started at my eyes, moved by the dear innocence and sweetness of this child of mine. I held his hand for a while, and then we climbed the hill to the car.

I am moved to write about some of the outcry over my Dreamchild post on Ballastexistenz, and to some degree, on my own blog. There’s a lot being said about how expressing feelings on a blog is actually a form of taking action on those feelings. I can understand that claim. They are afraid that my expression of those feelings will hurt Nat. When I expressed my feelings in Dreamchild, I thought I took great care to show how the bulk of my feelings about my son are positive and that I am taking into account his abilities when I write about him as well as when I deal directly with him.

What I can’t understand and won’t accept is the sentiment that “therapy culture,” as the comment describes it, is something to dismiss. That if I say that these are my feelings and they just are, they are neither good nor bad, that is something to dismiss as “therapy culture.” In fact, feelings are in a different category from thoughts and actions. Although for some cases, you can work to change your feelings, there are other kinds of feelings that you may not be able to change. Feelings that arise from wishes, from your own flaws, from others’ disturbing behavior, I don’t believe can be changed very often.

As far as my right to express those feelings, I maintain that I have that right just as much as those Ballastexistenz readers have the right to express their feelings by criticizing what I wrote. I took great care to put my feelings and their expression in a context that stated that I was clearly not happy about having these feelings; that I love and accept my son for exactly who he is; and that I would never hurt him; and that I was sorry for having hurt others by what I had expressed. Nevertheless I believe that my expression of those ugly feelings was very helpful to others who have also experienced similar feelings and then they feel even worse about themselves and their lives. Acknowledging our feelings, even publicly but with care and sensitivity can be helpful in working towards ultimately changing those feelings, or at least understanding how our actions affect others. I am grateful to Ballastexistenz et al. for pointing out how my blogging about my feelings is in fact an action that can hurt. Even though I thought carefully about how I wrote them down, using the references to Nat’s true age destroyed for them the message I was trying to convey. I believe I hurt them, that they are empathizing with Nat. And I thank them for that, and I apologize again for that part of what I did.

I disagree with Ballastexistenz who says that feelings don’t just come up in a vacuum. I find that feelings are exactly that and more. I don’t dismiss “therapy culture” that fosters that belief; I think that is absolutely the case.

I find it ironic that Ballastexistenz and some of her readers are basically saying that I should change my feelings, and the way I express them, when they take offense at society asking them, as autistics, to change their behavior and in some cases, to change how they see the world. I value the perspective the autistics in my life have brought to my world, and I will try in the future to be more respectful of their feelings, especially Nat’s.

I love extremes, anywhere in life. The first few chews of gum, for example, are as brightly delicious as the last chews are horrible. Is there any other food around that presents us with such extremes? Soft, pink, squooshy, sweet, mobile at first; small, dented, and rocklike by the end. (my theory is that once you blow the first bubble, it is the beginning of the end. The exposure to air saps it of its juiciness. You have to resist the lure of the tongue forcing the rubbery flatness into a sphere on your lips. So hard to do. You make the choice: longer lasting sweetness until it fades slowly vs. playful bouncy bubble-blowing and a shorter life)

It’s kind of like living creatures: babies are just about universally beautiful (except, I suppose, for the Seinfeldian case of the Singularly Ugly Hamptons Baby): round and perfectly miniature body parts, sparkly, nonjudgmental eyes, rosebud mouths. And kind of decrepit at the very end — not that there’s anything wrong with it. Actually, flowers, too, are loveliest when first opening, and then, of course, at their demise, you just shouldn’t know from it. Withered, brown, wrinkly, drooping, and the only scent left is usually an overly ripe faintly garbagey smell.

Also, it was the most perfect summer day. Every cheery cliche imaginable: warm, close air; sparkly sun; blue sky; good smells on the breeze; the faint sound of mowers; birds singing their wacky repetitive songs. As well as a few thunderclouds at around 5:30, the kind with strangely bright sun radiating around the edges, which turn the sky dark purple. I call it Thunderlight.

Today was the extreme opposite of yesterday. Today I had a firm grasp on my family and how to interact with them in the most pleasurable way. We came up with our Daily List for Nat, and he smiled through breakfast. I ran errands with Max and Ben, newly released from school. We got a treat when we were done. I had a bite of a Finagle Bagel. Iced coffee. I mowed the lawn, and did a great job of it. I weeded and hacked at the plants that were beginning to snake their way around my house, arbors, and roses. I walked with R around the Reservoir, with her little maltese Maggie, a white snowball of a dog whom I adore.

And when he got off the bus, Nat found the Evening List waiting for him, and there was very animated silly talk the rest of the night. I could just feel that there’d be no outburst. I was linked up with him and he with me. Occasionally I would hear his silly talk soften into light laughter, making me feel slightly drunk with joy. The light poked out from him and lit up our dinner with gorgeous, bubbly happiness. The contrasting kind of happiness that can only come from the relief of something very dark and heavy. Thunderlight.

I want to thank everyone who weighed in with regard to Nat and his outbursts. One comment in particular was extremely helpful, where an anonymous reader pointed out that sometimes even verbal people with ASD prefer not to talk; that it tires them out or frustrates them. Nat can talk, but hates to. And so Ned and I decided to use the written word instead, to set down on paper the salient points of his morning, and I will also do it for the afternoon.

He came down this morning and we merely greeted him, and silently left the note at his seat. He read it eagerly, again and again, like it was as interesting as the morning paper. And why not? It is all about the stuff that is most central to his day: what he and his family members are up to at any given moment. By the end of breakfast he was grinning and quietly silly talking in between bites of dry Reese’s Puffs.

We have been stymied by some of Nat’s outbursts lately.  Nat is a teenager with autism, a dynamic combination when it comes to excitability and unpredictable mood swings.   We realized, however, that even though he can communicate verbally, he does not like to and it may in fact tire him out. 

Ned suggested we write out the important points of each day for him, particularly at meal time, when we anticipate some kind of outburst.  This morning I recorded his morning on paper, and he came downstairs, read it again and again, and eventually smiled his way through breakfast.  Whew.  … See my Tabblo>

I went to the doctor, I went to the mountain
I looked to the children, I drank from the fountain
There’s more than one answer to these questions pointing me in a crooked line.
–Indigo Girls

There are three major components to understanding another human being: close observation of his behavior and drives; recognizing what is similar in ourselves; and then feeling what the truth is. I truly believe that if we understand what we ourselves do, our motivations, agendas, drives, and needs, then we can start to understand the people in our life, on the same meaningful level.

I’m still trying to understand why Nat has these disturbing fits. Often they are around the dinner hour; last night, for example, he worked himself up to terrifying screaming because he wanted Ned to use the chili powder, but Ned did not want to. We had to let him scream it out, pretending it wasn’t happening. Do not reward the negative behavior; reinforce and reward the desirable behavior. You think I like that? A behavioral solution? No, I don’t. But what else can others suggest? Particularly the ASD readers. Give me real advice I can use, if you can. I try keeping things very regulated and regimented; I tell him “first — then;” I talk him through the upsetting thing by repeating what he wants to hear. I hug him when he asks for a hug, which he often does. But I just found out today that these tantrums also have been occurring on the bus as he sits in the line waiting to be brought into school. He pinched his driver today, too. She told me how she responds to his screaming, and it sounded like what I do. We calmly and gently reassure him many, many times that the thing he is waiting for will happen in so many minutes. He likes the certainty of exact time, even though we are not sure that he can actually tell time by looking at a clock. He nevertheless has a real feel for the passage of minutes, hours, days, and weeks. And Denise, the driver, is now going to try to reduce the waiting time by arriving later in the afternoon and earlier in the morning.

With all that in the back of my mind, I discussed some of my own issues with my therapist today. How sometimes continual success and peace raise my anxiety levels, counterintuitive though that may seem. It’s like when things are going too well, I find myself thinking, “Wait, wasn’t there something that was bothering me, though?” And I feel the flicker of anxiety, worry without a name or shape. Then I search for that thing, plumbing the dimmer regions of my brain like a tongue hunting for a cold sore.

We talked about how this anxiety probably arose long ago, when there was some kind of disconnect between something I did and how it was received by my family. Such anxiety, I think, goes way back to childhood feelings of rage and impotence, the most primal fears of abandonment and death that we experience while very young. But we learn over time that we will survive this or that disappointment, betrayal, anguish. But I may not have learned it so well.

I flashed to Nat, suddenly, rather than any association with my own childhood. I thought of how much he is achieving in school lately; his last progress report had 17 goals achieved and only a few progressing. He is successfully employed by Meals on Wheels, he is mastering his community purchasing, his telephoning, his typing, his reading comprehension, his sports, his conversations, his interactive leisure time. All day long, from 8:30-3, he has teachers asking him to try this or do that, and when he does, they praise him. We see it here, too. So much great language, willingness to do his chores, his routines.

So then I wondered, does Nat, like me, feel a heightened anxiety that accompanies his own success, strengthened by his tiredness from all the hard work he does? Does he feel afraid of all the change he himself has wrought, through his determination during the school day? Does he feel, irrationally perhaps, that he will be cast into a scary, unknown, place if he allows change to occur? Because those are my feelings, so I wondered if this kind of anxiety for the next step — literally, the next phase, the transition — causes him to flip out.

Sure, we are not the same person, and perhaps he is actually blessed, like his father and brothers, with a stronger core. But I suspect he and I share a fragility that is shaped by our neurology and our childhoods, somehow. Anyway, I feel it, more than know it but sometimes that is closer to the truth than anything the data can show me.

I surely won’t get 28 comments on this blog post. But I got surfing and beaches on the brain today, even though it is overcast, because I am going to the Cape on Friday to see my parents and my sister. And I have been talking to my old Israeli boyfriend (from 29 years ago)about having him visit us on the Cape and teach us all how to surf! He has been surfing for decades. He taught me how to drive a tractor; why not how to get up on a surfboard?

See my Tabblo>

This is the third time I am using this blurry photo in my blog.

When I first saw this picture on Ned’s computer screen, I could not take my eyes off it. There was something about it. Soon I found tears streaming down my face and I knew what it was.

This, to me, is a flash of possibility, a little trick of What If. There is something here about his smile that is more open and wiser than usual, as if he is laughing at something tangible, rather than something in his own head. There is something so typical teenage-boy about his stance, something so expressive and confident about his eyes, maybe because they are blurry, that tricks me into suddenly knowing what Nat would have been like if.

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

And then I blink, and he’s himself again. And it’s okay. The soreness recedes mercifully fast, and I’m back, and it’s just a cute photograph. It’s him and it isn’t. You can’t construct people from your wishes, I suppose. That’s why we have novels.

Where does bad end and good begin? If you think about it, there is actually a very faint line between the two. There is a spectrum, in this as in all things. Of course we know a bad thing, and we know a good thing. Just like we know autism, and we know NT. But there is so much in between.

What am I talking about, on this lovely Monday morning, when I’m supposed to be at the reservoir, running? Is it that my iPod needs charging? Have I had too much coffee, not enough sleep, increase in Prozac? All of the above. But there is more. You know how I’ve been talking about Nat’s increased level of anxiety over the last six months — probably sparked by too much Luvox, just like the Period of Too Much Zoloft, see chapter 8 — and the new kind of howling/barking/perseverative behavior that has come out of it? A discouraging, scary, heartbreaking thing, right?

Yes. And no. For just like during that difficult, frightening time when Nat was 11, he has also had a profound increase in his communication abilities. He is more connected to us than ever. He not only obsesses about what will be happening to him (“Go to Colorado, summertime.”), he also obsesses over what is happening with us (“Max will wake up soon. Daddy’s on his way home from work. Mommy’s going to finish the laundry [endless laundry, because the big pants and shirts worn by my gigantic sons take up so much space in the hamper, d’oh]”)

This is not news, of course. I have been chronicling the various heartstopping comments Nat has been making, his emergence, little tentative forays into NeuroTypicalLand, an unpredictable place of loud noises, where people communicate with too many words and strange shapings of their faces and bodies; where the rules are mostly unwritten but everyone seems to know them without being told; where impulse reigns and consistency is the hobgoblin of little (and spectrum) minds.

But there is something else that has come of all this upheaval. As Ned was climbing into bed last night, he said, “You know, Sue, it actually worked out great at dinner. If it weren’t for Nat — “
I said, “I know! If it weren’t for Nat, Ben would not have come with you to the bookstore after dinner.”
“But because he was scared of riding home in the car with Nat, he went with Max and me!” finished Ned. “And they were chatting the whole way, Kingdom Hearts this, keyblade, that.”

We looked at each other. We had never thought of it this way. We had only been thinking that Nat’s scary outbursts are something we need to get at and stop, something that scares the boys and is therefore a bad thing.

But every stone thrown into our pond has ripples. Nat is finding ways to weigh in, to say, “I’m here, and I don’t like what you’re doing! I want this, instead!” And he is forcing his brothers — who have heretofore tried either to manage or simply ignore him in order to find their own peace — to pay attention to him and change their own behavior. They might be a little afraid of him these days. But maybe that is not all bad. Maybe it is a heightened awareness, a tuning-in, to Nat, and to each other. And if that brings about more connection all around, then that, my friends, is a good thing.

My grandma once said of my (at that time, two) little boys, “I got two millions, one, two.”  And then she realized she had left me out, and she added, “And you’re the thoid.”  Here are my millions.  And I’m the fourth, I guess. … See my Tabblo>

I realize that the last blog post is actually mostly just summary! That goes to show you how wiped I am. I feel good, but I have no energy to blog about it. I did this Tabblo while watching t.v. with Ned. We are both very happy about how the weekend went.

Look at the bottom left pic; see how much taller my boys are than me! I can’t believe it!

Come dance with the west wind
Touch all the mountaintops
Scale all the canyons and onto the sky
Reach for the heavens and hope for the future
And all that we can be, not what we ought.
–John Denver, “Eagle and the Hawk”

Too many things to write about, which is good, but it also ends up meaning I don’t want to write. I get overwhelmed when I feel that there is too much I have to write about. Then I start to get bored with my own life. So to keep that from happening, I have to get back to my writing-feeling, which means I just have to think about one or two feelings and memories from yesterday and write about them, rather than do some pedestrian summary for you.

Ned enjoyed his many presents, particularly the tiny indoor helicopter I and his sister had gotten for him (so he has two, but they are different, and he is totally thrilled with having both). I had also gotten him an antique Chinese calligraphy brush (Ned does calligraphy), a book on photography, and the new Paul McCartney CD (I hate Paul. Never saw the appeal. He also seems a bit whorish somehow with changing to the Starbucks label. My fave Beatle was George.). Max got him John Hodgman’s new book, which is really bizarre and funny. You can only read little bits at a time. And Ben got him a SuperHero Action Figure book. (Aagh! I’m summarizing, snore, snore)

So good seeing Mom and Dad, even though such a short visit. I had burned two CDs for Dad for Father’s Day, one was my favorite love songs combined with some Arabic artists (Natacha Atlas and Amr Diab) and other (like Eric Clapton and Bob Dylan) that I thought he’d like. The other CD was what I called “Out West Songs,” which are a bunch of old John Denver that he used to love during the ’70s, and Glen Campbell’s Rhinestone Cowboy. When I heard “Eagle and the Hawk” I had chills of delight and I called Laura immediately on her cell and asked her to listen and identify. She said, “Oh, wow!” It is a wallop to the system, the rush of teary, sweet memory of just hanging out with Dad, being part of his joy.

Mom and I had the best walk and talk while we went to get sodas at the Games. There is nothing, absolutely nothing, as satisfying and embracing as a heart-to-heart with Mom when you are in great need. And I was. I have had a really tough year. Too many ups and downs even for me. But she just set me straight and gave me lots of hugs that felt like the most familiar thing on earth and yet also different because she is smaller than me now.

And Nat. Oh Nat. He was in The Zone. And I don’t mean the Pinching Zone, I mean that peaceful happy spot for success. He was quiet and patient while he waited and waited for his heat in the Men’s 25 meter freestyle. We all sat together in the steamy building watching the others in their races. Stephanie, Nat’s old teacher who is also coming with him to his sleep-away camp, joined us.

He filed in with his team, ahead of everyone else, tall and beautiful, a slight smile on his lips. He got right into the water. He swam his hardest. Those guys were fast. I was sure he came in second, but he ended up getting the bronze. He was standing there on the podium; I wondered if he felt a twinge of disappointment the way I did at realizing he’d come in third. But once they slipped that medal over his head, he burst out in the most gorgeous grin, which stayed on his face until the car ride home.

A very big weekend begins. It is Ned’s birthday tomorrow, and the Massachusetts State Games of the Special Olympics. Nat will be swimming after lunch, at Harvard. Mom and Dad are coming for the Games and I will give Dad his Father’s Day present tomorrow. It is a great present, something I have made myself and I know he’ll love it. I can’t say because sometimes he reads this. Suffice it to say I have been full of summertime memories, of Out West trips and Mom and Dad, young and hippie-like (Mom, always stunningly beautiful, wore big floppy hats, big sunglasses, and pigtails; Dad wore long sideburns, cut-off jean shorts and cool tee shirts that said things like, “Go Climb a Rock, Yosemite Mountaineering School.” I have always been so proud of them, of their youthfulness and their idealism. And they love this country, and imbued us with the same love for it by taking us to so many national parks.

All this and Neddy Sweets. I will cook his favorite dinner tonight (Jambalaya with extra sausage and no shrimp) and a special dessert. I better get going on it (with Nat’s help, of course) because it is already 4 o’clock. I have some really good presents for him, and figured out what to do about the big one. We are also going out tomorrow night, to some good restaurant somewhere (his choice, so it won’t be fancy, you can bet).

Then Father’s Day and more swimming for Nat. The Flag Day celebration is big in my town, but I’ve been so many times and the boys could care less about the parade, the rides and the funnel cakes.

Summer’s here, and I’m for that.

You can really drive yourself crazy wondering what’s what in people. Nat has been exhibiting fewer signs of anxiety overall in the past two weeks (he did fine when I was away in South Dakota last week). But Ned has noticed that the outbursts (growly howling and shouting and arm biting and obsessive questions) happen around dinner time. I don’t think it is that he is hungry; I think it is that dinner is too often chaotic in our house. Since getting his new job, (actually it was that they were acquired by Hewlett-Packard and then moved out of Cambridge, to the distant suburban Route 128 loop) Ned can never be home at a predictable time. He has to fight the Mass Pike, 128, and Route 9 traffic. His commute is easily 45 minutes. (My poor city boy. Ned, who grew up on Manhattan’s Upper West Side, didn’t even learn to drive until he was married to me, on a car that my dad thought of as his “dream car” when he first bought it, and then eventually sold to us for $1, a blue Honda Accord hatchback, which we called “The Kid” because of its license plate letters. Remember those wonderful Accord hatchbacks?)

So at around 5:30 Nat starts doing a loop from the living room into the kitchen, talking very fast with a little bit of kvetch in his voice. It does no good for me to ask him what’s wrong or to talk to him or offer a snack. He wants what he wants, but I am still not sure what it is, because even once Ned is home and we start eating, he is still not happy. Sometimes he works himself up into a crescendo of moaning and barking (and I do not say that pejoratively, it is simply the most apt description).

I feel bad that dinner is so unpleasant. I don’t know how to make it better, other than buying happy and fun desserts. What happens is that Ben gets quiet and finishes really quickly and runs away somewhere. Max waits to talk until our attention can come back to him, because we are so worried about Nat, so conversations are long and drawn out and difficult to maintain. And Ned and I cannot talk about anything other than things to try to get Nat to stop. Lately we try ignoring the shouts because sometimes that does make him stop, but it seems cruel because he seems miserable. I know, you have to be cruel to be kind, but I F***ing hate that concept. Anyway, I wish I knew who was more miserable, whose misery was more important to attend to of my three children, but I cannot see into their heads.

So Ned came home with his head hurting the other day, and he mentioned it as he was getting ready to sit down to dinner. I heard him say it but it didn’t even register, I was so preoccupied with Nat’s noise. At the moment Nat was perseverating on the salt and pepper, which was already out in front of him where he likes it, but somehow he needed to keep talking about it.

Suddenly Nat said, “Daddy will take Tylenol.”

We looked at him, and couldn’t help smiling and all the heaviness lifted off our faces like a good burst of Botox. Ned said, “Nat, that is a really good idea. I will take some Tylenol.”

“Daddy will take Tylenol.” This became the new autisto-mantra for the next few minutes.

I found myself thinking, I wonder if he says that because he really cares or is it because he simply knows that you take Tylenol when you have a headache, in a simple cause-and-effect way.

And then I thought, “Sometimes a cigar is just a cigar.” and laughing to myself, I began shoveling out the meatsauce (next to the pasta, because Max and Ben, allegedly NT, can’t stand to have it touching. Nat eats it normally, like us).

Real Simple is a magazine that has grown on me. I used to call it “Real Nudgy,” but then my sister-in-law, who is Ned’s twin, and is someone I feel very close to even though I don’t see her much, got me a subscription. This made me give the mag a second look. It’s kind of hypnotic with its clean, glossy layouts; the photo spreads are so alluring that they make even housecleaning tips or office organizing look like something you kind of want to do.

They have a feature this month which asks, “What is your favorite summertime memory?” Readers submitted single paragraph descriptions of a moment in summer that was wonderful or a summertime practice they have loved, using powerful and sensory-oriented phrases, like “the smell of the rain when it feel on the pavement on a hot summer’s day,” or “riding my Schwinn bike, with floral banana seat, or course, in the 98-degree Iowa heat with a Popsicle melting so fast it dripped off my elbows.”

This delighted me. I began to think about some of my favorite summertime memories, childhood and adulthood. Here’s what I came up with:

Childhood
Picking blackberries at Montauk Point, Long Island, with my sister, standing on a soft, narrow dune path filled with pale yellow-green pointy beach grasses. The ocean was just over the rise, so you could see it here and there through the grass (I was very small, probably six or seven.). The berries were tart and the seeds stuck in your teeth and filled your nose with their sharp, tangy aroma.

Teenage
Waiting for my date to arrive for the Junior prom (I was a sophomore). He was a very nice young man with wavy black hair and a wide smile and his brother’s Astin sports car. I had the perfect dress: a pale pink Gunne Saxe dress (this one is satin, mine was cotton) with tiny flowers scattered across it. I went to the garden and picked a peony to put in my hair (very long, mid-back, wavy-curly dark brown) and an ant crawled out onto my face!

That’s all for now…off on a field trip with Benj to the beach, of all things (it is 60 degrees and cloudy).

I was tagged by Drama Mama, a reader who makes very kind comments and has quite a life herself! I’m supposed to tell you 8 things you might not know about me.

1) I want a fourth baby. I might want to adopt one with special needs. Why? Why not?
2) I adore bombshell fashion: cherry red lipstick, hot pink fingernails, high heels, short shorts, etc. I might go completely blonde one of these days.
3) I am highly attracted to Steve Jobs, Kevin Costner, and Bill Clinton.
4) I believe all women should wear bikinis on the beach, regardless of age, size, firmness, and color.
5) I believe no men should wear bikinis on the beach. The best thing on a man is long, colorful surfer shorts. I know, I know, they don’t have that little lining! So??? Live a little!
6) My favorite thing on earth to do is to write; my second favorite thing is going out at night; my third is staying at the beach beyond 4, when the sun is more mellow and lower in the sky and people have gone home.
7) I used to always fantasize about moving; since I’ve been in this house, I never do (seven years).
8) I wish I could find out what it really feels like to be someone else, to really get inside someone else’s head. How different would it be? Does red look the same to you as it does to me? Do flowers smell as sweet? Is sweet sweet to you? Or what I call stinky?

I tag SkiverDon, Tamsen, and Roy Goodwin.

My friend R asked me and other people in her life to jot down a few “words of wisdom” for her daughter, who just graduated from high school. I was touched by this request, and I was also surprised by what I came up with, and then after reading it, not surprised at all. See what you think:

Most of what I know of you is from your mother, so I have been enjoying you grow up vicariously, which has been a double pleasure for me because I have no daughters. I think I would have enjoyed a daughter like you, although mothers and daughters are so intertwined that often it is tough for them to actually enjoy each other. I know this because I am a daughter, with a lovely, intense mother, who still has the power to irritate me and disappoint me at the age of 44! But the thing is, she is also one of the only ones who has the power to make me feel truly listened to and deeply adored. There is that emotional embrace that comes from a long conversation with your mother that no one else can give in that particular, intimate way. Maybe you don’t relate to what I’m saying at the moment. You have not been away from your mom long enough, perhaps. But in time, I think you’ll come to see what I mean.

I think that this “advice” can apply in the general sense as well: things are not what they seem, especially people (especially mothers). Take another look. When you think you know someone, look again. Never dismiss, unless you sense cruelty. You should never put up with cruelty, by the way. Know that you deserve the best, but not in a Princess sense; I mean you deserve the best treatment from others but for that you must give it to them as well. The trick is not to give yourself away too quickly. That is where your mother can help. She is a very centered person (and I am not saying she is perfect!). But she has a real solid understanding of herself, and therefore of others. She sees the good in people, while being able to discern their flaws. She does not dismiss them for their foibles, but rather, looks beyond them. And she laughs.

If there is anything I can convey to you about what I’ve learned in life it would be these things (of which I’ve probably told you too many by now!): 1) your mother’s voice can be one of your inner compasses, but not your only one; 2) you will have to learn how and what to shrug off, and what to keep, from others; and 3) look for people who make you laugh and who laugh at your jokes. It is those people with whom you are your truest self, and that is another path to happiness.

Good luck, I’ll be hearing about you in the years to come.

ps. 4) it is really okay if your husband is your best friend!

I know that I said that a sunny day can be a burden sometimes, but that was yesterday. I woke up to crazy bright sunlight and was so glad. The first thing I thought was, “Bike ride!” Sunday is the best day to do a bike ride around here because there are some scary areas in some parts, like at Beacon Street by Boston College. There on a weekday you will find so many cars parked and as you ride by you are constantly afraid of being doored. And crossing over to Hammond Street is hard because their is no Walk sign where there should be. And then, of course, you have to cross Route 9, a crappy Interstate that runs East-West through Brookline, Boston, Newton, Natick, Wellesley, etc. and is just plain ugly congested nearly all the time.

But on Sundays, you get a break for the early part of the day. One of the lovely things about my bike ride is that at the halfway point (Route 9) there is a Starbucks. A favorite thing of mine to do is go with my friend R and end up there. We have our coffees, and then she rides home and I continue on. So I am hoping today she is free to do that.

Last night Ned and I went to a wine-tasting party which was the good kind of wine-tasting party: tons of wine, info about it if you wanted it, but nothing formal at all. Just drink and mingle. There was also a psychic from psychics4today.com, who was telling us how we should try online psychic if we were looking for trusted physic and then he later went about reading palms as I pretty much expected he would.  After each person went, we would discuss what she had been told (very few men opted for the palm-reading). She got a remarkable number of astonishing details for each of us.

The first thing she said to me was, “Oh, you have psychic powers, too! You’re a healer of some sort. You travel? And help others?” And then she said, “You have three children and one of them is helping you write a book?” It was very cool. She told me I’d be going to California, New Mexico, and Arizona to give talks. I thought, “Hooray, those are totally fun places to go!” She said a pilot would have an impact on me; Ned made fun of that choice of words. She asked, “Who is Margaret?” and I told her she is Nat’s doctor. She said that Margaret (Bauman) has a lot of important information to share with me. I would say so. Margaret Bauman was central to my understanding of autism, and over the years she has become a friend and mentor. She also appeared on the Today Show with me. Margaret is one of the foremost autism experts, who first pinned down its neurological basis (and helped exonerate parents from their refrigerators). Everyone knows that you don’t put bananas — or mothers — in the refrigerator.

We actually got to bed at midnight. Nat and Max had waited up for us, sans incident. I am so relieved that Nat seems to be feeling better about everything these days. He asks several times to go over whatever facts he needs to hear, and then he drops it. “Daddy is waking up soon. Daddy is waking up soon.” And I tell him, “Yes, of course, Darling!” And he sits on the stairs, waiting patiently, and he keeps his anxiety to himself, the sweetie. There is not much I can do to make him less anxious, but he has learned how to control his behavior. He is incredible, he really does what he can, my Miniman. I believe he has a deep sense of intuition about the people in his life; talk about psychic. When he wants to, he can plug right into my mood and connect with me. Those who say that auties are in their own world and don’t care about others and don’t connect with others are saying far more about themselves than the auties they claim to understand.

And I had too much caffeine
And I was thinking ’bout myself
And there she was
Like double cherry pie
Yeah there she was
Like Disco Superfly…
–Sex and Candy, by Marcy Playground
Not much to do today, the weather is icky but my mood is not. I have to say, sometimes a sunny day is a gift, sometimes it is a burden, an obligation to do something worthwhile. And I no got. My chores are all done (thanks to Nat, there is never any laundry to do, he is such a laundry nudge, forces me to empty the hampers all the time and wash, dry, and fold, and put away immediately!! or else he will do it, and man, then you get some creative laundering going on! Also I weeded yesterday, the house is clean, and I just bought weekend groceries from the little market nearby which I love to do on the weekend because of the handsome young clerk that works only on Saturdays.) and so all I have to do is read my book, (The Birthdays by Heidi Pitlor, which is eh so far, two too many characters so they are not distinguishable enough, I hate that.) and make whatever meals. Prolly jes ‘make some meatballs and s’getti, a total crowd pleaser and easy, plus I got sausage! Sweet Italian, of course!

I figured it was a good day to bake, (we already made pancakes for breakfast, again, Nat gave me the idea because I had a dream that he came up to me and said, “I want to make pancakes,” so realistic! When I woke up I realized it had been a long time so why not? So as I started to get the bowl and stuff out, Nat came in, I looked at him meaningfully and he said, “I want to make some pancakes.” A dream come true!) and being so close to Neddy Sweets’ birthday, I decided to bake something he would especially like. Why wait until next weekend, when he’s expecting it?? Plus there’s Special Olympics State Games and Father’s Day. His birthday gets totally crowded out.

While he was at the pool, Benj suggested banana cream pie. So that’s what Nat and I did. Totally homemade cookie crust, (well, if you want to call mashed up graham crackers, butter, and sugar homemade) but totally instant (beat it from the box) pudding. Really, really creamy, suitably yellow, just rolls off your tongue down your throat. Very hard for a non-carbivore to resist.

Had a ton of coffee today — can you tell? — and also four different Atkins bars plus diabetic candy. My sweet tooth is up to 11 today. I should probably dance, it’s been a while. That’s a good way to get a high that is neither illegal nor fattening nor upset stomach inducing — at least not my own!