Susan Senator

There I was, feeling immensely sorry for myself; I had no idea what to write and I was convinced that a dear friend of mine had given up on me, or that perhaps I should give up on him. Plus the rain! I sat here, on my beige checked windowseat, looking at the pillows, selected lovingly and carefully by me over the years, a tableau of cream and blue-green: two very large white linen square shams; two smaller green and beige striped throws; one lace inset rectangle; one large sage and blue with ribbons; and one long rectangle blue-green with white pom-poms. I tell you this to give you a vivid picture of my surroundings. Precious, my computer which helps drive me crazy (like Gollum Smeagol‘s ring), was mocking me with her blank expression.

Anyway, Ned came in. First, he said that I should write about the Special Olympics State Games, coming up next week. He told me he had heard a Penn Gillette podcast, in which someone had likened something to the Special Olympics, implying that it was this dumbed-down thing where everyone wins. After the red had cleared from my eyes, I agreed that, yes, this was a good thing to write about. I was now in one of my chip-on-my-shoulder moods and thought for a moment about facetiously calling it, “Retards?! Sign me up!” But that, of course, was not what I really wanted to say. What I wanted to say was that the Special Olympics are actually very competitive, with the same a**hole parents (me especially) you’d find at any sporting event, who’ll do anything to see their kid win, and the same great people who become your friends for life.

But this is not about what I wrote. This is about how I felt better. Because after Ned gave me the oped idea that can’t lose, he sat down at the piano. He sits with his back very straight, a little dorky I must say, but so sweet. And he played a Ben Folds song we both love, and saw together performed last summer. And he sang along, totally off-key. I joined in, my voice trying to lift his to the right set of notes, but to no avail. So we kind of harmonized together in pathetic cacophony that pleased us very much.

Autism is not, as so many think, about not perceiving the existence and or importance of other people’s minds. Although I know and respect Simon Baron-Cohen, I think he got this a little backwards. For this neurotypical mom, autism can be more accurately described as an ongoing struggle to get my child to understand that he has a will and a mind of his own. I experience Nat’s autism as an extremely passive existence, whereby he is so unto himself that he does not realize his own power. He also seems to attribute far too much power to me. I first understood this when he was a little guy, and did not know to ask me for juice, or did not know how to ask me for juice. He learned to say, “Want juice?” as a question, in effect imitating me so that he would get what he needed, which when you think about it is an ingenious adaptation. The autism experts explained to me that this is echolalia, a “problem” or “symptom” of autism.

I used to think of Nat’s echolalia and silence as the relatively simple problem of not knowing how to ask; increasingly I believe it is that he does not know to ask. I think that the latter is a far larger problem than the former. One can be taught various means of getting words out, whether by signing, typing, using pictures, etc.

But how do you teach someone that they should get words out? That they should do something, for their own good, to fulfill their own needs?

I remember sighing to Ned that I wish I could get Nat to understand that playing with toys or other people was not just something I wanted him to do but was something that he wanted to do. Yesterday, Nat pinched both Ned and me because it was raining out. In this way, he still insists that we are in charge of everything, from the weather to when or what he is going to eat. I believe that this is a manifestation of the same ultimate passivity, or of being so completely unto himself that he does not perceive his own separate existence, will, and ability. Or perhaps passivity is not a good word; perhaps it is more the existentialist “en-soi,” the being so completely what one is that the quality of your very consciousness is different from others. Because I am aware of causation and my limitations as well as my strengths (at least, compared to Nat), I don’t blame other people for the shitty weather. I know to help myself whenever I can. And usually I know when that is, but not always. Nat, on the other hand, does not seem to know any of this.

These days, Nat will not ask for anything without a prompt. The ABA-ists will state simply that Nat is “prompt-dependent.” Perhaps there are techniques for “fixing” that. But perhaps it was the ABA that strengthened this tendency in the first place. Nat, who began life as someone so utterly within himself, has become so used to our structuring of his world that he may be incapable of structuring it for himself.

I am not blaming ABA. I think that this is an educational technique, like all the others, that helps teach people certain skills. But the fatal flaw in ABA is that there is this magical fade-out of prompts, this expectation that there will be a leap from the specific skill acquisition to the general. But the leap from specific to general is a huge chasm for Nat. I now think it is the same underlying problem, the leap from feeling something within to realizing that he can be the master of his world.

More mundanely, I am now considering placing simple reminder cards all over the house that read like this, “If you want to eat, go to the refrigerator or the cabinets and make a choice;” or “If you are bored, you can choose an activity, like listening to your Ipod, scootering, reading a book, watching t.v.”

Anyone else have any ideas?

If you are in your early 40’s, it is very likely that you think National Lampoon’s Animal House (1978) is one of the funniest movies ever made. (My all-time favorite movies are at the end of this post.) Think about it: the John Belushi (Bluto) scenes alone make it an all-time classic. The part where he is staring in the windows of the girls’ dorm and he falls off the ladder; the part where he is sneaking across the lawns of the college green; the part where he hits the beer bottle over his head and breaks it, smiling, trying to cheer up Flounder; the part where he grabs the sissy guy’s guitar and smashes it up (“I gave my love a cherry, that had no stone…”); and of course, the Food Fight and cafeteria scene (“See if you can guess what I am now.” (Inserts ball of cottage cheese into mouth, puffs out cheeks, squirts out cottage cheese right into frat boy bully Greg Marmalard’s face) “I’m a zit, get it?” He leaves the cafeteria after snorting like a horse at Niedermeyer, a real bad guy, ROTC instructor, whose horse had been accidentally killed. Animal House came out right when I was finishing high school and I had never seen anything so funny. My sister does a fantastic imitation of the horse twisting its huge head and dying. I guess I have not grown up much.

Favorite Movies (not in any special order) and why:
1) Shawshank Redemption — perfect, fascinating tale of revenge
2) Ordinary People — beautiful story of healing; Mary Tyler Moore — a villain!
3) Gone With The Wind — Vivien Leigh, Clark Gable, need I say more?
4) Animal House — see above
5) All the President’s Men — perfect suspense, acting, dialog, mouthwatering men, great political moment in history
6) The Sting — Redford and Newman! Fantastic plot that took me many times viewing to completely understand
7) Jaws — oh, that shark! The scary stuff, the agonizing suspense on the boat!
8) The Graduate — coming of age movie, classic.
9) Annie Hall — all-time best relationship, New York Jewish culture movie
10) Bull Durham — Kevin Costner at his hottest, great story about baseball and sex

I am in the worst mood. I am waiting for feedback about my novel — I have completed a first draft, whoop-de-doo — and I have NO ideas. I sent a great piece to the Washington Post for Father’s Day but I think that they have blocked my email address. [Not really.] So I am going to spew out a list of my “favorite” top pet peeves (“peeves” is an awful word, perfect for an awful, irritating, nudgeball thing).

1) Editors who don’t get back to me or who reject my stuff
2) Friends/relatives who think they are editors but don’t know sh**
3) Being taken for granted
4) Summer fruit because I can’t eat it on Atkins
5) Field trips I don’t go on and feel guilty about
6)Breakfast shares and evening concerts and parent-teacher conferences
7) Failing ozone layer
8) My parents going on fantastic vacations and never taking me
9) Men/boys who can’t communicate probably because they don’t even know what’s going on in their own heads/hearts
10) No one new to flirt with – wish I didn’t need that

I got the announcement today from Autism Speaks, that Senator Rick Santorum, Republican from Pennsylvania, of the extreme right wing of the GOP, is to be the Honorary Chair of the Seventh Annual Walk for Autism in Pittsburgh. I do not appreciate the Autism Walk being identified with someone who is so heavily ideological, known for his anti-gay rhetoric as well as his infamously stupid statement about Massachusetts, in which he actually blamed the “liberal culture” here as the reason for the pedophilia scandal in the Catholic Church.

Oh, sure, Senator Santorum’s affiliation with the hallowed cause of autism research proves that autism is a universal challenge that spans all political beliefs. Or does it? I think that the Wrights’ naive use of such a conservative symbol has suddenly and unfortunately thrust autism into the poisonous heart of Washington politics. The Wrights have a right to do whatever it takes to raise money for autism research: the ends justify the means. Or do they? With this decision, Rick Santorum comes out smelling like a rose because of his humanitarian ties to Autism Speaks, instead of the intolerant peabrain he really is. Maybe he ends up being reelected, score another point for the right wing that has grown in such strength in this country and given us wonders like tax breaks for hugely wealthy oil companies (while our gas prices rise astronomically) and voted huge budget cuts for public education while choking school systems with more and more difficult mandates like “No Child Left Behind.” While IDEA has never been fully funded.

A person so highly identified with the right — he only recently recanted some of his beliefs in “Intelligent Design” — is not a wise choice to lead a crusade for something as non-political as autism research. It is foolishly naive. Autism Speaks, yet again, but not for me.

Suddenly a thunderstorm
in your head
makes you hurt —
What causes this weather
the grey matter,
tiny electrical signals
crossed irrevocably?
Does your heart
twist like mine
After the storm has passed
Do you want to undo
stroke, soothe, sorry
But you can’t
When it builds again
where does the pressure come from
heat shimmering in air
words dying on tongues
Cerberus stands guard
of your blue eyes
you sail away
but I am lured

I remember feeling like no one understood the special pain I was in because I had an autistic child. In one of my interviews, I was asked a really good question: if I see the world divided into two kinds of people: those with autistic kids and those without. I did feel that way once. I used to believe that my pain and disappointment over Nat was something no one could understand. Then again, I believed that I could make everyone understand if I wrote about it. I would make them understand and they would not feel sorry for me — or Nat — but they would simply “get it.”

It took me a long, long time to realize that pain is pain. There’s no comparing yours with mine. It just is, and we need loved ones to get us through awful times. Each person is entitled to their own particular hell.

The story about Christopher DeGroot being burned to death by his parents epitomizes hell. This news item made me want to lie down and give up. I read about it on a fellow blogger’s site, crying, and then, a moment later, I jumped off the couch and hugged each of my boys. I whispered to Natty, “I love you, Darling.”

I have tried to forget about Christopher — even though I never knew him — but he haunts me. He was just a little older than Nat, and apparently quite “severe,” whatever that means. Aggressive, disruptive, difficult to read, difficult to manage; I’m sure these are the terms applied to him.

What else was Christopher, to borrow from Ballastexistenz? Who was he? What made him laugh? Did he love the ocean? Or love/hate it, like I do? Did he stim? Did he like Disney? Could he talk? Write? Sing? Did he have a thing for pillows, like Nat does? Or had he begun to actually notice people and want to have friends, like what’s happening to Nat? Was he sweet? Funny? Mischievous? Athletic? Dorky? Couch potato? We’ll never know. He’ll just be “that autistic kid who died a horrible death.”

I, too, have been through terrible times. When we didn’t know how to get Nat to sleep, when he was seven. When Nat attacked me, while I was holding Benji in my arms. When Ned had to wrestle Nat to the ground in public. When Nat’s school called me to come get him and expelled him.

But he’s my son, and though I may hate him sometimes — or perhaps more accurately, what he does sometimes — I also love him so much it hurts. My firstborn, who changed me irrevocably from little innocent me to a Mother. With Nat I first experienced joy that makes you cry, ecstasy and love that is physical but not sexual. I also experienced how to get past perhaps the most difficult thing in the world: death of certain dreams. And, perhaps best of all: I learned all about completely different ways of experiencing the world.

Christopher’s parents will never know who Christopher could have been and the world will never get to respond to him and interact with him and learn from him. He left this world in unimaginable pain and probably terror and confusion — I keep wondering what his last thoughts were. I can’t help it.

How can such horror exist?

I cannot get past that image, of a boy like Nat some might say was “trapped” by autism. But truthfully, the only thing he was trapped by were the locks on his door and his family’s inability to cope with their life’s pain.

I did not know Christopher, but I will carry him around in my heart. We all should. There’s always room for more.

There’s got to be a morning after
If we can hold on through the night…

–Maureen McGovern, The Poseidon Adventure, 1972

Last night Ned and I went to see The DaVinci Code, which was sold out, so we opted for Poseidon, which I secretly wanted to see even more. Standing there waiting to buy our tickets I felt the way I used to when I waited for a roller coaster ride to begin. “Are we really seeing this?” I asked Ned, horrified and way-too-excited.

“We are, but are you gonna be okay?” he asked, wisely. Ned has known me for about 25 years and so he is well acquainted with my thing for the ocean. It is a bit of a phobia, in the sense of a love/hate, fascination/fear.

Ever since I was a child my family took vacations at the ocean. It would always be either at Montauk Point, Long Island (a then-unspoiled stretch of gorgeous Atlantic Ocean you get to after the famous Hamptons) or Truro, on Cape Cod. My dad was well aware of my fear of the waves, so he used to tease me about it, which was — right or wrong, for my therapist to decide — our family’s way of trying to get someone over something. Sometimes it worked, sometimes, not. Dad would make a soft wave noise and wave his hand in front of me until finally it “washed” over my face. I would both shudder and laugh.

Laura and I loved the sandbar that would occur magically, it seemed, (at low tide) and Dad would be “Flipper,” and give us rides on his back. We also had our own floats. I had a turtle, Laura had a rocket. It turns out she really envied me the turtle. I told her I didn’t know that and would gladly have traded!

But when high tide came, the waves would come roaring in and we’d have to get out. We learned how to body surf, and played “hello-goodbye,” which was a game where we sat at the water’s edge and let the waves drag us in, (goodbye) and then push us back out (hello). Mom and Dad would take some moments together and go off on rafts (back then you could take rafts into the ocean). I have a memory of seeing Mom waving from the huge waves, and feeling the terror engulf me that she would drown. How could someone be out there and survive?

But I learned. First, with Mom and Dad holding onto me, and then later, on my own. I developed a certain ocean bravado, where I would run in if Laura dared me, and she’d say, “If you go, I have to go,” and vice-versa. But deep inside, I always watched the waves carefully. Mom used to say,”Don’t turn your back on the ocean,” anytime we were wiped out by surprise. Then, in 1975, Jaws didn’t help. Dad used to say about Jaws, “If only they changed one letter, the movie would be so much better,” meaning, if the movie were Jews, it would be about Jews rather than a shark! I took him to see Jaws, which I’d seen with a friend first. I was thirteen. It was my first PG movie I’d gone to without him or Mom, and so I could tell him just when to cover his eyes.

But my parents took me to see Poseidon Adventure and none of us knew when to cover our eyes. The best part, of course, was when Leslie Nielson, the captain (back when he was still serious in these kind of roles), holds up his binoculars and says, “Oh my God!” Then you see what he sees: a 90-foot rogue wave!

The rest of that movie is, in my opinion, (that is redundant considering this blog is entirely my opinion), a gory escape that is something you can miss, only because it can’t hold a candle to that wave.

Critics have called that wave cheesy, or silly, or campy special effects from the ’70’s. But in 1972 I was 10, and at the height of my wave fascination, so it worked pretty well for me. Watching Poseidon, the remake, I have to admit that I was disappointed by the much-vaunted wave of 2006 digital effects. It looked to me to be about as real as Moses dividing the Red Sea in the Ten Commandments — stunning, beautiful, but not very scary. (Here, by the way, is an interesting riff on the Ten Commandments, thanks to Max!) A better wave is at the end of Point Break, a surfer-dude crime spree movie starring Keanu Reeves and Patrick Swayze (a real feast for the eyes). And the surfing documentary Step Into Liquid has some amazing footage of tow-in surfing, where you use jet-skis to take you directly to the biggeest waves in the middle of the ocean. Open Water was probably the most horrifying of all ocean movies; knowing it is based on a true story, of a couple who goes diving and is left behind by their tour boat, makes that only worse. It is an awful, awful movie on nearly every level, but the scary stuff is so incredibly well done it just makes your heart break for that couple.

The scary parts in Poseidon came after the wave, when there were up-close shots of the wave crashing into the boat, and the enormous force and power of the ocean could be felt as it pushed open steel doors, cracked huge windows, forced bodies up into the air and out, and you could really feel it. The worst part of all is when a mom is separated from her boy — he is trapped behind a screen of some sort — and watching them prepare to say goodbye to each other. He is calling, “Mom,” silently through the water. That was when I squeezed Ned’s hand the hardest. He said, “Go call Max.” I ran out and called at that point to check on them. (“Huh?” said Max unenthusiastically when he heard it was me for the third time that night. “Yeah, we’re fine.”)

I wonder what Nat would have thought of the movie. He has always had a fascination with the ocean, too. The first time we ever took him to the beach it spurred a lot of talk from him, albeit self-stim and not entirely comprehensible talk, punctuated with the word, “ocean.” Sheer joy on his face the entire time. He’d never seen anything like it, something so large, loud, dramatic, repetitive predictable, and yet, not. No one ever had to tease him into the ocean; he took to it immediately. He has no fear of it, even though he has wiped out on boogie boards tons of times. He and Ned go in with their wetsuits, rain or shine, 55 degrees and up, the wilder the better. Sometimes Dad joins them, looking like a walking stick insect in his wetsuit. I go in — especially if Laura is going in — but mostly I prefer to lie on the sand and get a tan and dole out the snacks.

With your feet on the ground you’re a bird in flight
With your fist holding tight to the string of your kite.

–Mary Poppins

The rain did stop and because it’s May, when the sun is out, it is so out. Intense enough for tanning (yeah I know, I know, not good for me, shut up).
So then Ned said, “Picnic somewhere?” and I immediately agreed, but we realized it was just a little too windy. So I said, “How about we fly kites?” We haven’t done that too much en famille, though we seem to get kites from people all the time. We gathered up two pink parafoils and a Spongebob Cheapkite and headed off for Larz Anderson Park, a huge former robber baron estate in our town, which has a large hill (and a view of Boston).

Took a while to get the hang of it; the wind was erratic. Ben said, “Stupid wind,” and I started singing, Idiot Wind, of course. I was exhiliarated by the wide open field we were standing on, and I found I could still do a cartwheel. I think Nat felt the same, because occasionally he would start leaping and sprinting like a wild colt. Benj thought he discovered a whole new species of spider; it was about an inch long, chubby, furry, and had blue in it! We took some pictures of it and kind of harrassed it until suddenly it reared up to of its legs (or fronted up?) and skittered away.

I had a feeling Nat would like flying kites because of how much he loves the movie Mary Poppins. The very last scene is “Let’s Go Fly a Kite.” But the thing I forgot about was just how much Nat loves string! String was the very first object that gave him obvious joy.

He was delighted to be able to twirl and unfurl string to his heart’s content, and watch what the kite did in response.

A new column from last week’s Brookline Tab, FYI.

After all these years of being stuck in the seventies, listening to “classic rock,” I was suddenly so bored with my music that I started flipping around the radio dial (of course it is no longer a dial, hasn’t been for years, but whatever). I came across this song and was mesmerized. This was before a friend sent me the video.

Shakira has started a whole new thing for me. I could not buy Hips Don’t Lie, (if anyone can get it for me for my iPod, much obliged) so instead I downloaded her song La Tortura for my/Nat’s iPod, also very sexy and great to run to or mow the lawn to. Not sure what my neighbors think when they hear me singing half-garbled Spanish. I now have Jammin’ 94.5 programmed into my car radio and I have become acquainted with rap and hip-hop. Sometimes it is just too much, too repetetive, with simplistic sexist content; but so is a lot of rock, too. I find myself listening to the words and I learn stuff. In Krazie Bone’s Ridin Dirty, this guy sings about racial profiling and crooked cops. In another song, whose name I don’t know, the woman is singing all about being unfaithful. Very sad.

So after watching Shakira gyrate in her harem-esque garb, and trying it myself, I decided that I was going to learn belly-dancing. Why not? These old thrice-contorted abs could use a new kind of workout. Don’t worry, I’ll spare you the pictures!

Through corridors of sleep
Past shadows dark and deep
My mind dances and leaps in confusion.
I don’t know what is real, I can’t touch what I feel
And I hide behind a shield of my illusion.
So, I’ll continue to continue to pretend
My life will never end
And flowers never bend with the rainfall.

–Simon & Garfunkel, 1965

Why does my equanimity slip through my fingers like water? The day after writing my screed about the Autism Everyday video from Autism Speaks, I find myself feeling completely defeated. I brashly posted yesterday’s blog entry on an autism email group I’ve been part of for some time, and everyone who responded talked about all the different recovery treatments they were pursuing, and how they’ve been so successful. How moved they were by the video. How they will never stop trying to make their children “well.” It was kind of the last straw for me. I unsubscribed, because I could no longer bear to read about the various modes of chelation, the oils, the vitamins, the diets, the laying-on-of-hands and the children who mysteriously de-autisize.

Then I got the news that Nat had a half-day today. All plans shot to hell. I said to Ned, “I can’t do it — ” Last time I brought him into the boys’ school at pick-up, he had a terrible tantrum and was hitting me and Ben in the head over and over. I had to walk him out of the school, holding his hands together. Thank God I could.

The funk settled over me like the dust that gathers in the corners of the house, minutes after I have vacuumed. Suddenly, looking at Nat, whom I still cannot leave alone in the house, I felt so trapped. This is forever. Eternal responsibility. Albatross in the shape of a beautiful young man. I felt the old familiar torpor, the overwhelming need to nap, heavy head crushed against soft white pillow, the desire to cry and cry without anything tangible causing it.

I looked at Nat, as still as Buddha, on the white couch, and I heard the same evil tape recording playing relentlessy. Did I…? Why doesn’t he…? Will he ever…? We don’t even have a regular respite worker! All he does, aside from school, in terms of therapy, is speech once a week. We are so pathetic! What might I have missed?

I was so sad about being sad about Nat. A direct violation of our Sweetie Treaty, Ned’s and my contract from long ago: No feeling bad about feeling bad. But I did. I really did.

The heavy rain did not help.

Ned knows me so well. He knows how conceivably, I could put on the Allman’s Sweet Melissa, the song that conjures up Nat’s labor, and weep fresh tears until my whole face is puffy and red. I could eat a tub of chocolate ice cream without blinking. Finish it off with doritos. Call up friends who are not always so good to me.

After lunch the Winston Flowers truck drove up. Parked unmistakably in front of my house. The guy came out with a huge, chunky floral arrangement of tight orange ranunculus, Caribbean blue hydrangea, peach roses, and lilacs. The color seemed especially vivid in the gray of the afternoon sky.

Ned, I thought.

The card read, “Stay Strong.” Ned, I’m getting there. If only this rain would stop.

A good, strong moment.

I do not like the concept of recovery from autism. On a bad day, I think that’s because Nat did not recover and I’m jealous. On other days, that’s because I am offended by the concept. I am offended by the deluge, courtesy of Autism Speaks, the Schafer Report, and other similar organizations, that portray autism as the worst thing that can happen to a child. There is an assumption embedded in everything these people, undoubtedly well-intentioned, present, that autism is nothing but a disgusting, family-wrecking, life-ruining tragedy and that these kids bring only sadness in their current incarnation.

I understand firsthand how difficult it can be to have a family member with autism. I literally wrote the book on living with an autistic child. I have faced years of sadness over what I believe Nat has missed out on, what I have missed out on, what his brothers have missed out on because he is difficult for them to know, how hard the behaviors are, and on and on. I suffered as a young mother trying to understand. I suffer as an older mother worrying about Nat’s independence and future.

But the older I get, the more my perspective has shifted. For one thing, I now know many autistic people (adults and children). I have had autistic people tell me what things are like for them, the pain and the joy. When you meet adult autistics, it changes you. You realize that there are very different people out there, and that that is okay. You realize that there is loss, but that loss is everywhere. Coping with autism is the first thing many parents have to face, the first among many other things. But autism is not the only “villain” in life. Autism is a stressor, but so are illness, change, jobs, adolescence, divorce.

It is so difficult, when you are a young parent first dealing with something as blatant and challenging as autism, and others around you are not. It is so difficult not to compare your life with your friend’s, your autistic child with your typically developing child. Society doesn’t help: strangers judge you, identify you as a bad mother when they don’t know better. School systems are not up to speed on autism. There is so little public money around for services that parents have extra work and expenses in helping their children.

All that is true and really, really hard. Couple that with all the stuff you think your child doesn’t get to have and to be. It is chokingly sad. I know that. I’m the one who cries (still) when Nat listens carefully to the Little Mermaid singing “Part of That World.”

I still do not believe that we are tragic. My new pain over Max pulling away from me is every bit as horrible and debililitating at times as the autism pain has been. My grief over Ben being excluded from a birthday party hurts just as much, and I have to let that in as much as any autism pain, because my children count equally in my heart. When I confronted the possibility (gone for now) of my mother having cancer, I felt chopped in half with fear.

When families put all of their emotional eggs into the recovery basket, they end up missing the bigger picture. Forget for a moment the message that their children may pick up from their parents’ constant drive to fix them. Forget the message that the other family members may pick up from maybe not being as important as their autistic sibling. Forget the message that the husband and wife impart to each other when they cry about how awful their life together has become, and can feel nothing else.

I have no answer for how to feel something else. I lived through that awful splitting, when I could do nothing but cry and Ned wanted no part of it. All I know is that there is often a shift as our children age and we see more who they really are and we are forced to drop our preconceived notions of Hallmark Card living. We finally get it: that this kid is tough to live with, parenting is really hard work, there is no escaping pain. But it is not the end of the world. Happiness still bursts through, that ray of sunlight on the edge of the clouds.

Life is hard, nature is red in tooth and claw, no one was ever promised a rose garden. My most basic feeling is, let’s stop blaming autism for so much misery in the world and just focus on our kids and how to bring out the best in them — regardless of their wiring.

I have of late, but wherefore I know not, lost all my mirth.
–Hamlet

Recently I wrote a post about my midlife crisis, and how I characterized it by inexplicable spaces that press in on me during my day. I have been exploring new friendships and stretching the boundaries of my old ones in an effort to understand myself and what’s going on with me. For a while, I attributed my newfound sadness to an intense relationship that has been a real roller coaster ride. I also have believed that the long sameness and routine of my marriage were contributing to those blue-gray moods of mine.

I have had a recent epiphany about this wintry state of my mind, however. It has to do far less with my marriage and friends, and much more with loss. I have come to the end of two major things in the last few months: my book, and my boys as needy children.

As difficult as my early years were with Nat, because I did not understand him until he was older, and as rough as I found the monotony of mothering small children, I did not anticipate how I would feel about the growing independence of my children, particularly Max. I joke about the new sullenness I see in him, my sunny, wide-open boy, but the truth is, I deeply miss how he used to be. I rejoice in his emerging adulthood, and what a wonder he is turning out to be, and I know that he is supposed to be independent and downright contemptuous of me sometimes. That is part of the process. And yet, I realize how much I miss just being Mommy! That heroine that I used to be, someone who used to automatically bring a smile to his face and whose lap he would fight over with Ben and Nat. I am so much a part of the furniture now. Old, junky furniture, too.

And my book is kind of over. Even though a paperback is due out in December, the first blush of my mission, my huge goal of nine years, is finished in this particular form. Another offspring (of sorts), grown. From the day I set out to write my first article in 1997, and dreamed of being on national television talking about Nat and what’s good about him, to the moment I waited in the green room of the Today Show, I have been on a high, on a roll, trying to make this thing happen. And it did. In spades. I have loved every minute of it, every reading, every conference, all the new people I’ve met and the conversations I’ve had about autism and life.

So, I’m not asking for your sympathy. I’m just realizing what has been going on in my heart, the cause of the soft squishy pervasive sadness underfoot that is with me in just about everything I do, everyone with whom I interact. When I was a young, fragile mother, I would wish for the days of silvery strength that I have now, and for my kids to be able to feed themselves, walk to and from school themselves (for the most part), make their own friends. And I also remember wishing fervently with every birthday cake, and every lost eyelash, that my book would become real.

I guess I am learning the true meaning of be careful what you wish for.

As many of you know, I am married to Ned Batchelder, who is a software architect. He joined a small start-up in January, called Tabblo, and has been working around the clock (except when I yell at him) to get their product launched. On Monday, the “beta” version of Tabblo was opened to the public, so anyone can go try it out. Tabblo is a photo-sharing bit of software, maybe a little similar to a blogging program, but much higher quality. With Tabblo, you can just pull in any of your digital photos, pick from dozens of lay-outs, including addding text, and create and then buy a “tabblo,” a printed-out poster or collage of your own on beautiful paper.

Do you see where I’m going with this? Tabblo provides an incredibly easy and beautiful way to use your photos to tell a story! When I tried it, I realized immediately that this product provides the perfect medium for Nat Books, or Crisis Stories, which are my own version of personalized Social Stories that I have created in the past to help Nat through any new event or experience. We have Nat Books about going to Thanksgiving, Christmas Dinner, Moving, Baby Brothers, Going to Sleep, Going to Disneyworld, Visitng Friends, Making Friends.

Many of my readers have asked me to do a book that explains how to make Nat Books/Crisis Stories so that they can make them for their own kids. I may do that someday, but right now I can offer two things: 1) Go to Tabblo and learn how to use this simple, beautiful technology to create and then purchase your own Crisis Tabblo for your child ($10 for the entire thing on poster-quality stock!) or 2) Have me do it for you: email me your relevant digital photos and your problem and I will construct a Crisis Tabblo for you and you or I can order it from Tabblo.

If I get a lot of interest from this, I will persuade my publisher to make this happen in book form.

Here is an example of a Crisis Tabblo that I threw together in twenty minutes, to show Nat for my sister-in-law’s upcoming wedding. I can order it and then hang it up in Nat’s room, where it will look wonderful, and he can study it and prepare himself for this big upcoming event.

I love the fact that Natty loves Cinderella. He grins and grins at it while he’s watching. It may not be Disney’s best effort, but it was actually the very first movie I ever saw. I have a very vague, long-ago dreamlike memory of driving to the Wilton Cinema in Connecticut with my mother and my sister and seeing it there. There were two parts of the movie that I loved the best: first, where the birds and mice create a beautiful ballgown for Cinderella, out of scraps, and then, which gets ripped off of her by the bitchy stepsisters. I probably shouldn’t admit this, but I think I got a tiny bit of a sexual frisson at that part. Maybe Nat does too; God knows he is a red-blooded teenage boy.

The second scene I love is when the Fairy Godmother whips together her ballgown from the tattered dress, with the flick of her wand. Cinderella reaches upward and swirls of magic whirl around her, head to toe until she’s covered in a frothy bluish-white confection of a dress. Granted, Cinderella herself is a bit of a milktoast as a character; she is just too good to everyone, although she does mutter under her breath at her “family” who orders her about. She is, however, the epitome of the abused person who can’t leave her situation. I feel for her, because where could she go, in an era like that? And she probably didn’t want to admit that her situation was as bad as it was. But how much anger must have simmered beneath that placid surface. It is just a tiny bit evident at the end, when she produces the mate to the glass slipper, now broken. “But I have the other one,” she says calmly, knowing at that moment that she holds the world in her hands for the first time.

Cinderella is the ultimate make-over and living-well-is-the-best-revenge movie. These reasons are why I have always loved it. But I do not know what parts resonate for Nat. I love his unabashed enjoyment of a “princess” movie; I love the way each of my boys ends up in the room, watching, at some point, even though they would never admit that they like Cinderella in the least. There is something deliciously satisfying with having these three very masculine males glued to the television watching the trials and tribulations of this poor young woman, who is destined to become a princess, thereby challenging all of society’s narrow notions of what American young men are supposed to like.

I suppose the most important aspect of Cinderella is the Fairy Godmother, who took whatever raw materials were around and made them into something wonderful: rags became a dress, mice became horses, a pumpkin became a carriage. She gave Cinderella the chance — albeit limited, only until midnight — to be whatever she was up to being. Whatever she felt like being. A beauty at a ball, rather than an abused maid. And though he is no Fairy Godmother, and his brothers are not (thank God) abused, sometimes it feels like Nat gives my other two boys the freedom and opportunity to be more who they are simply because he is so much the way he is.

Yesterday we celebrated Mother’s Day, my dad’s birthday (69), Laura’s belated birthday (45), Ben’s belated birthday (8) with my family in Connecticut. Somehow, it was a glorious, sunny, hot day, totally ex machina. Mom got a Carvel ice cream cake and Laura and I ate some even though we are both usually carb-free. Delicious.

We divided into two teams: Dad, Mom, Nat, Ned, me vs. Max, Paul, and Laura, and played wiffle ball in the back yard. Laura and I kept laughing about everything and everyone, making totally dirty jokes under our breath just like when we were teenagers. So much fun. Got a tan, plus, I never struck out once! I got a ton of hits. My strategy? Hold the bat “wrong” (Ned’s description) and swing at every single ball! I got more hits than anyone!!! Probably helps that pitching for their side was my 10 year old nephew! Paul is a very special kid; totally Nat’s ally. Asks him what he’s thinking about, tries to teach him how to skim board and how to use the bat.

They won, 10-7. Dad pitched for our side and despite absolute shoulder pain, he was very good, just like in my younger days. Mom was pretty good at batting, it turned out! (The tree doesn’t grow very far from the apple?) You may be wondering what happened to Ben and Kimmie, Laura’s little girl who is Ben’s soul mate? They were in Littles World, which is what they do when they get together. They get so absorbed in their play together that they don’t even eat.

Later on we were scootering down the slope in Dad’s driveway and riding on toddler trucks, all hunched up. Ben is very good at stunts. Max hurt his ankle. Ben and Max bickered over the scooter. Mom and Dad bickered over dinner. I got pissed at Max for pouting over the restaurant choice and at Ned for sticking up for him. Nat seemed utterly content, which was good. We all made up and ate a huge Italian dinner.

Ned drove the whole way back home (nearly three hours) while I slept in a car-induced stupor of cramped-neck drowsiness. Home at 11 p.m.

I woke up at 6:36 a.m. but knew that I could not get out of bed because the men were supposed to bring me my coffee. I tried to go back to sleep and succeeded until around 7. When Ned heard that I was up, he swung into action. But I came down before he could bring me my coffee; couldn’t wait anymore. We ran out of Splenda so he had to go get some. He decided to go to Dunkin’ Donuts and get the boys treats and bring me a few Splenda as well. Couldn’t get Nat to come down and eat his donut because I guess he was “busy” in his bedroom.

Max and Ned got me some gorgeous earrings and Benj made me a Mother’s Day Coloring Book! Every page has a drawing of a different item I care about, with color-by-number instructions: one page has my boys, one page has the cover of MPWA, one page has two diamond rings, one page has Ned! Ben also made up a poem for me:

MOTHER
She lets me watch TV,
She helps me when
I scrape my knee.
When I’m hot, she
puts on the A.C.

She sets the timer
on the oven, I really
like her mother lovin.
Her kisses make me
feel like I’m hoverin.

I love mother and
she loves me, hearing
this, she’d blush with glee.
She sews the clothes
that need a mend, and now its…
THEND
love, the youngest.

I am totally undone.

Sorry to be sexist, but I think boys play sooo differently from girls. I am sitting here in my windowseat watching the puppies (Max and Ben) play. It is completely physical and lightly abusive. They smack at each other, say, “ha-ha!” like Nelson Muntz, grab at each other’s feet and pull one another to the (hard) floor. Usually it is Max who gets Ben, then he kisses him a little! Puppy love. My heart melts at their sweetness. I sit in a love-drunk stupor, a pile of sugary Mommymush.

When I was a girl, my sister and I only rough-housed when we were either truly fighting or playing “fight in the dark” with my boy cousins, Larry and Ronnie, who were our age, a little older. Sometimes other cousins were there. We would go into their parents’ bedroom, all get on the bed, shut the light, and who ever you would bump into you would wrestle. Totally innocent, I swear! It was pre-pubescent play. It was just pure fun, and sometimes a little painful, but nothing inappropriate. I remember getting hurt once, and crying to my dad, who said, “Well, you’re going to play with the boys, you’re going to get hurt sometimes.” I heard him, believed him, and went back for more.

As I grew older, I realized that truer words were never spoken, right girls? Yet my enjoyment of playing with boys has never dimmed.

If only I could get as much of a kick out of the little pleasures stumbled upon in a day the way my kids do; I think I’d be so much happier. Nat and Ben in particular still have the child’s appreciation for simple things. Max is so close to adulthood, he is far more difficult to please; particularly the fact that he’s fourteen makes it all the more of a challenge to muster his smile.

This morning I was reading to Nat the book Henry and Mudge and Puddle Trouble, a book Nat is very familiar with, and just when we got to the parts where Mudge eats Henry’s blue flower, I looked at Nat and he had a big grin on his face. He could not wait to hear about Henry’s profound disappointment. And the same thing happened later when Mudge shakes himself off and gets mud all over Henry’s dad. Big toothy smile for Nat. Made me smile, too, where I might ordinarily have been a little bored, having read it a million times.

And tonight after dinner, Ben said, “Oh, I can’t wait for Tuesday [tomorrow] morning!”
I said, “Why, Honey?”
And then I knew, the moment I asked. I had been told three times this weekend to buy Cookie Crisp cereal. I had been asked this afternoon if I had remembered to buy Cookie Crisp cereal. And now, I could proudly answer my own question: “Oh, you are going to try Cookie Crisp cereal tomorrow morning!”
And he grinned his toothless pirate’s grin.

Can you imagine being so young and easy-to-please that you’d be excited about the next day’s cereal?

I do remember that younger me, being so crazy about Lucky Charms. So was my sister Laura. When we went on vacations, my mother bought the mini boxes with an assortment of cereals (Remember the Kell-Bowl-Pack? So obscure I could not find a link on Google! Where you could eat the cereal with milk right from the box?). The first to go would be the Lucky Charms and it would be a problem because of how much we both loved them. It was so hard not to only eat the marshmallows! But you have to eat the cereal; that’s part of the deal.

Sometimes at home Mom would break down and buy us Lucky Charms. Actually, most of our cereal was junk cereal but there was something particularly egregious, in her opinion, about Lucky Charms. Now a mother, I agree with her. Back then I did not. Every morning we would grab a box and pour a huge bowl and sit behind our designated boxes. We would play “What do you pick?” This was a game we made up — and which Laura liked far more than I did but I was a good sport and typical kid sister so I played — where we would ask the other questions from our boxes: “What do you pick, hearts, clubs, squares, or suns?” The answer was “hearts,” the shape being the Lucky Charm shape she was looking at. And so on. It was a kind of nudgy game.

Dad would come downstairs and find us hunched behind our boxes, scooping and slurping huge spoons of sugary crap dripping with 1 % milk from Stew Leonards and he would say, “Ah, the Dry Cereal Consumption Factory is in operation!” Ever pleased with himself, even though he made the same joke every single day of my childhood.

I guess Dad retained his childlike joy, come to think of it. He probably still gets excited about his cereal in the morning, although because he’s a health nut, it’s something disgusting like Bran buds.

Emmy unloaded her cart onto the conveyor belt at the Stop and Shop, and thought, as always, that her family’s diet was atrocious. Kocoa Krispies, Froot Loops, Twinkies, Oreos, soda, pretzels. Fat, sugar, carbs. The holy American trinity. Her food was weird but healthier: turkey breast, half-fat cheese, bags of lettuce, Boca Burgers, nuts. No fruit, but she rationalized that easily. Who needed fruit, when there were multivitamins? She got fiber, she got Vitamin C. Did she really need the sugar that a slice of watermelon offered? Mmm, she thought, that pink sugary water… Stop! That way lies madness.

May would be the beginning of her fourth year on Atkins. At first it had been the hardest thing she’d ever done, giving up bread and sugar. But after a few months, it was second nature. She never thought about bread anymore, unless she was eating out in a nice restaurant. Then, she could not believe the smell of a good, crusty bread or the give of its soft white middle on her tongue. She would hold it to her nose and inhale it, like Nick did with food or people who wore perfume. Eric used to joke that inhaling bread the way she did was also fattening. “One carb for smelling,” he’d say.

She was going to be seeing Eric on Sunday, when he dropped off the boys. She was going to try to see D*** Saturday night, and she was a little nervous about having to report the details of her date to Eric the next day, their new bargain. She got a little frisson thinking about it, too. Ew, what is my problem? she thought. And then, Well, why should I judge myself? Sexuality is just another feeling, like everything else, isn’t it? She dug in her wallet for her Stop and Shop card. We can’t help what turns us on. What pushes our buttons —

“You have to push ‘Enter if you don’t want cash back,’” the cashier said impatiently, interrupting her thoughts. Em looked up and suddenly noticed a line of three people with very full carts standing behind her. In fact, the person closest to her was too far up already, practically blocking Emmy’s access to the card swipe. “Excuse me,” she said a little brusquely, because she was embarrassed at having held up the line and because of her hot thoughts, even though no one knew what she’d been thinking about.

It seemed to her that Saturday would never arrive. She woke up to a hot, sunny late May day, and figured she’d mow the lawn for her exercise. Em always used a push mower so that she wouldn’t have to bother with gas. After an uneventful breakfast and send-off of the boys, she hauled the green clumsy mower out of the shed and started pushing listlessly. It was always so boring to mow the lawn, at first, until she started to get into the zen of it, until the paths started to show, the light green striped pattern that formed on the lawn. The click-click-click of hearing and feeling blade biting into grass was like a slow, sweet massage. Also, she loved the smell of the grass as it was clipped. Sometimes she got a little wheezy but most of the time, all she felt was a pleasant light sweat.

After the lawn was finished, Em got out some large paper bags and started to do some weeding. Webs of chamomile had sprung up across every empty space in her gardens overnight. The good thing about the chamomile was that it had tiny roots that did not hold very tight, not like the crabgrass that sent a carrot-like root down deep within days of popping up. Em often wondered about the secret lives of plants. (Wasn’t that a book title? She should go find out and read it.) She marveled at how there would be absolutely nothing one day and then a three-inch growth of green the next. What happened? When was the exact moment when life began? The million-dollar question of the century, she thought, thinking about the whole Life vs. Choice debates that raged over abortion. Since having Nick, Em was not nearly as staunchly pro-Choice as she’d been. Not that she wanted to decide for others, but she wondered how many people abort disabled babies, and regretted it. Or would have regretted it, had they come to know Nick or someone like Nick. But people assumed she was more pro-Choice than ever because of the autism, but actually, she was horrified to think that there may have been a prenatal test for autism and maybe she would have aborted Nick, not knowing what autism or Nick were really like. Some of her friends thought that now especially she would want to know, but when she was pregnant with Henry and Dan, she did not want to know anything. She just wanted everything to be alright, whatever that meant. “If he’s autistic,” she told Eric with a bravery she did not really feel, “I just want to be able to deal with it and be happy. No more suffering!”

“No more suffering. Got it,” said Eric, rolling his eyes. She remembered how he had put his hand on her swollen belly and said, “Ya hear, Child? Don’t make ya mothah suffah!” He sounded just like her grandma, who had adored Eric, her grandson-in-law, more than anyone else in her family, up to the day she’d died. “He’s a good man, even though he’s not a professional,” she used to say, referring to the fact that Eric was neither a doctor, nor a lawyer, the only professions in her family. Fetal Dan had kicked him hard in response. Typical, she thought now.